From jacque@oz.net Fri Nov 1 16:58:04 2002 From: jacque@oz.net (jacque@oz.net) Date: Fri, 1 Nov 2002 09:58:04 -0700 (MST) Subject: [Bobwatch] Dream a little dream for me Message-ID: <3060.166.128.54.100.1036169884.squirrel@www.oz.net> I woke up at 5:30 this morning to call Bob's Mom in Ohio. I wanted to reach her before she went to the office. Turns out she didn't work today, so I could have waited until a little later. We spoke for about an hour, and I related the new distressing details of Bob's condition. When we ended the conversation, I went back to bed, knowing the alarm wouldn't go off for another 90 minutes. The three of us will meet at the hospital for a 9:30 patient care conference with Bob's doctors. In that last period of sleep, I experienced the first dream I've had since Bob was injured. We were holding a coming home party. All our friends were there, with lots of food and music playing on the stereo. ("The Living Years" by Mike and the Mechanics. Weird, huh.) With no explanation, Bob pushed his wheelchair away from the table and went into another room. I excused myself from our guests and followed him down the hall. He was in a room filled with computers. I watched him stand up out of his wheelchair. He then got on his knees and crawled beneath one of the desks to fiddle with the connections. I was dumbfounded. Although I really don't know why I was so surpised; in my waking life, before the accident, Bob's blue-jeaned butt sticking out from under a workstation was one of the more common and reassuring sights in our household. He eased his way back out and turned to face me. Still on his knees. "BL," I said, crying, "they told me you were paralyzed!" "But they didn't say forever," he said, smiling. Then I woke up. From jacque@oz.net Sat Nov 2 06:19:48 2002 From: jacque@oz.net (jacque@oz.net) Date: Fri, 1 Nov 2002 23:19:48 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/1 Message-ID: <3072.166.128.54.100.1036217988.squirrel@www.oz.net> Dr. Thomas Vater, the spinal surgeon, spoke with Don and I extensively last night. He then answered many of our questions at a patient care conference this morning. Dick, Don and I were all at the meeting. From my hastily scribbled notes---you medical types, please correct me if I have any of this wrong. Dr. Vater says that Bob's spinal injuries are among the worst he's ever seen, especially from a fall. "He must have taken many hits on the way down," was his conjecture. Those who were with Bob confirm this. Let's start with the paraplegia. Bob experienced what is called a "burst" fracture on T4. This completely corresponds to no sensation from the nipples down, which is where we are. A burst fracture is analgous to stomping on a bag of flour, with a little recoil factor thrown in. Bone fragments spray in all directions. The vertebrae is compressed and blows out and back. Almost without exception, the cord is instantly compressed, nerve roots and vascular flow are constricted, and you have an immediate "ischemic event"---that portion of the spinal cord dies. This means that Bob was paraplegic from the moment he was on the floor of the mine. In some twisted way, I take a bit of comfort from this fact. The doctor said it again and again---T4 burst, instant paralysis. Which means we never have to second guess about whether it could have been avoided. Apart from the fall, I mean. We don't have to wonder if it was the protracted rescue process that did it, or if he was jostled too much in the helicoper, or if ....if....on and on and on. The paraplegia was a done deal from the moment the accident happened. The doc did say that you really can't tell the full extent of burst fracture from x-rays. What happens is that after the compression, the ligaments and other connective structures try to snap back into their usual places. You know something is terribly wrong on the x-ray, but only in seeing it first hand can you tell how badly the spinal cord is compromised. Bob also has a T5 anterior compression fracture. There is no cord compromise at that point, not that it really matters since it is below the catastrophic T4 break. During his Monday night surgery, titanium screws and rods were placed to stabilize the thoracic spine (all those T vertebra). They also borrowed some bone from Bob's hip to strengthen both ends of the T2 through T7 internal fixation repair. Screws and bolts are only useful if their anchoring material holds. OK, now that we've covered the irreperable paralysis areas, let's focus on current trouble spots. Bob's neck is the next frontier. He has much cord swelling in the cervical spine and surrounding tissues. This puts pressure on his trachea, making breathing difficult. I am also told this could put him at risk for more serious respiratory problems down the line. Biggest deal, though, is that this cervical cord contusion, this swelling, has potential to render him quadriplegic. Starting at the very top of the spine: C1 C2 torn ligaments, posterior ligamentous swelling Cord damage at C1 C2 is not compatible with life. If that happens, Bob will die. It is at this point of the conference that I lose it. "But he was breathing just fine when I first saw him on Sunday," I insist. "What went wrong?" The doctor reminds me that swelling takes a while to materialize. We all know this from spraining an ankle, right? Moving on: C3 C4 disk injury, flexion distraction injury In these areas, the cord is not mechanically compromised, but there is substantial swelling. Bob will require additional surgery in this area. C7 T1 lamina fracture Messy but not risking the cord. Dr. Monroe (orthopedic surgeon) had planned wrist surgeries for today, but the increase in cervical swelling makes that too dangerous. They're delaying until Bob can be stabilized in a halo brace, which holds his spinal column immobile and is installed with four pins in the head. When I left the hospital this morning, there was a specialist taking measurements on Bob, and they shaved places on his head where the hardware will go. They are custom ordering it from Minnesota, it should be in by tomorrow afternoon. Once he's in the halo, it will be much safer to move him, turn him, sit him up, etc. Then and only then can they can start repairing the compound wrist fractures. Bob is on IV steroids once again to help with the swelling. He is also getting periodic insulin shots, in that steroids raise blood sugar levels. We do have to take it hour by hour in waiting for the swelling to resolve. Our more active goals are extubation, avoiding pneumonia or bacterial infections, and minimizing unpleasant side effects from all the medications. So---the doc says, until proven otherwise---Bob is what they call an "incomplete quad." The "incomplete" is only because we've seen him move his fingers once and hope to again. But there is still hope he'll return to para status. If the neck swelling resolves before damage is done... You know it's a sick and twisted turn of events when you find yourself begging that your husband will *ONLY* be paraplegic. After I first saw Bob on Sunday night, at the very beginning of my involvement with this crisis, I devised a scale to help keep perspective. From best-case to worst-case: Bob ends up: 1. Badly injured, but will walk again with rehab 2. Paraplegic with no apparent brain damage 3. Quadraplegic with no apparent brain damage 4. Regaining use of legs but has brain damage 5. Paraplegic with brain damage 6. Quadraplegic with brain damage 7. Dead See? We're only at 3. I can almost crack a smile. If all goes to plan, Bob will be at UMC for at least another month. We migt be able to move him to California by Christmas. He'll wear the halo for at least 3 months. After that, they'll remove it and xray the cervical spine both flexed and straightened. If things mesh nicely, he moves on. If not, they will fuse the vertebrae in his neck. Rehabilitive therapy will go on for many, many months. In summary, Dr. Vater isn't comfortable with where Bob is now. (How's that for understatement.) He will start to relax when Bob is in the halo brace, sitting up and breathing on his own. These last few days have been grim. I look forward to being able to pass on good news soon. Bob has been heavily sedated since he was intubated on Wednesday. I miss him. His eyes flutter open occasionally, and I try hard to establish connection before he fades out. Before intubation, there was some question about his vision. He was complaining about visual field and clarity the morning after surgery. Doctor held up one finger, Bob called it three. His eyes didn't track well, either. An opthamologist checked him out and found nothing obviously wrong. The nurse tonight says his eyes dilate evenly, but dilation is sluggish. This is no change from the time he had his last CT scan. I assume they will recheck his vision when the breathing tube comes out. I believe the hospital is handling Bob's pain fairly well, although he's had some trembling episodes where he sometimes grimaces. They are sticking to a regular routine of morphine. Sometimes the nurses will administer it a bit early if the shaking gets too bad. Bob was moved from Trauma ICU to Surgical ICU late Wednesday night. In Trauma, he was allowed round-the-clock visitation from a handpicked few. In Surgical, visiting hours are 10a-10p. We have been pushing those boundaries a bit, especially on closing time. Don and I have been able to stay here until 1, sometimes 2 in the morning. We're pretty quiet, stay out of the way and try not to rile the patient too much.We don't want him to kick our ass when he gets better. I am usually the one with him when it gets late. Dick handles the day shift, me the night, with Don generously overlapping into both. I talk to Bob a lot, telling him whom I've heard from, passing on get well wishes and information on people who have called or emailed. I tell him about my "Bobwatch" subscribers--he is certainly rolling his eyes at that one. I tell him what the kids are doing--Julie taking Simone to the Halloween parade at Graham's school, Carly's preparation to be a defense lawyer in her history class Boston Massacre trial. Today I even admitted that I drove his car at 100 mph on I-15.I wasn't trying to be a leadfoot. I just didn't want to be late for the conference with Dr. Vater. BL, if you ever read this, I apologize for calling your baby unremarkable. Butta'. She rides like butta'. Tonight I am singing to him. Some of the nurses have looked askance, but no one has yet asked me to stop. I hold his hand (ever so gently! The boy's got mangled wrists!) and it seems to get his attention. His eyes open a bit and his heart rate increases--it has been too low for my taste tonight, between 44 and 50. Need to ask about that. Nurse this shift is Kenyan and very wonderful. I sing some of the pop songs I used as lullabies when Simone was a baby--Shania Twain's Still the One, Bangles' Eternal Flame. I'm doing a few traditional favorites, too--Waly, Waly and Brahm's lullaby (all four excruciating verses), Rock-a-bye Baby and All The Pretty Little Horses. I know those songs by rote from singing them every night cribside. In my upset state, I'm not able to come up with too many others. They should evoke happy family memories for him, even if the selections aren't exactly to his liking. I've started reading to him--I don't currently have the attention span for books, so our fine literature is Newsweek or Time Magazine. This week's issue has a great piece on Vice City, the sequel to Bob's beloved GTA3. I do appreciate those of you who read my updates. Believe it or not, it helps me feel like we're not so alone in this. The Lynn(e)s in my life are treating me well. I just received two care packages from my friend Lynne T. in Northern California. I am excited about opening them when I get home from the hospital---there's not much to look forward to these days. My buddy Lynn H. in Seattle has done much medical terminology translation for me over the phone, plus she wrote a thoughtful and very touching essay about our struggles. You can read it on her web page: www.alexandlynn.com. Please stay safe, all of you-- Jacque From jacque@oz.net Sat Nov 2 19:05:42 2002 From: jacque@oz.net (jacque@oz.net) Date: Sat, 2 Nov 2002 12:05:42 -0700 (MST) Subject: [Bobwatch] [Fwd: Re: Thinking of You] Message-ID: <3047.166.128.54.100.1036263942.squirrel@www.oz.net> -------- Original Message -------- Subject: Re: Thinking of You From: Date: Sat, November 2, 2002 12:02 pm To: Hi Caroline-- Thanks for writing. I can't even start to tell you how horrible this all has been. And it just seems to be getting worse. Knowing that people are thinking of us and pooling their collective cosmic energies on Bob's behalf helps me feel not quite so all alone. I did get a chance to talk with him Monday. Mentally, at that point at least, he was still Bob. Exhausted, in profound pain, and slightly disoriented---even so, he was able to give me some instructions. Let's just say it was a jump start to me taking over the household things he usually handles. Ay. It's been a while since I've had to be left brained. Banking, insurance, employment, disability... His fall was Sunday morning, we are 6 days into his recovery now. He has had spinal surgery, more x-rays, CT scans, MRIs, ugh, it goes on and on. Since Tuesday afternoon, he has been on a respirator and heavily sedated. He's receiving steroids. Insulin. Blood thinners. Antibiotics. Morphine. He has more tubes going in and out of his body than I can count. With a few exceptions, those caring for him are competent and caring, although we had a nurse yesterday that told me I should be the one covering Bob up (he was trembling), because she was on her BREAK?!#!@#!? She should be rendered for parts. They can do that at a hospital, right? But she is the exception. Everyone seems to be very concerned, for the most part, with handling his pain. His prognosis is not good. He is certainly paraplegic, and will most likely end up quadriplegic. He has extensive injuries in his cervical and thoracic spine. I was having brunch with Lynn Hinrichs in Redmond while Bob was lying broken in a mine shaft near Vegas. It is a terrible juxtaposition. My children are back in our Palo Alto rental house. My husband's father's wife Julie (I guess this makes her my step-mother-in-law, if there is such a thing) has moved into our home and is taking over for me while I'm in Las Vegas. I will never be able to repay her for this extreme kindness---they can have somewhat normal lives, albeit without me and their Dad, and I am free to concentrate on Bob and getting him as well as we can. I miss my kids. I have been able to talk with Carly (13) almost every night, going over the events of her school day and keeping her posted on Bob's recovery. Graham (9) will come to the phone, but he really just wants to get back to his Game Boy, doncha know. I especially miss Simone. I'm sure you understand this, having a daughter just a little older. (Simone is 3 1/2.) Carly and Graham have school, extracurriculars, some outside friends, music and computer interests...lots of distractions. Simone has...had...me. And now she doesn't. Our new Palo Alto friends, an amazing group, have taken Julie and my kids under their collective wing--play dates, Trick or Treating companions, delivered dinners, etc.--and one friend even found a preschool slot for Simone. She starts Tuesday. But you know what? I didn't WANT Simone in preschool. I wanted her home with me! I am grateful that she has a distraction now, don't get me wrong, but she is my baby, my last born, and I wanted her with me. Shit. Today Bob will be put in a halo brace. Once he's stabilized, they can turn their attention to repairing his wrists. He's just a mess. There is swelling in his cervical spine that needs to resolve before we can stop holding our breath. He will be in the hospital for at least another month; there will be many, many months of therapy after that. I just want to get him back near home so we can all be together. Thanks for letting me vent, Caroline. I look forward to ordering some of those magnificent veggie enchiladas with the jalapeno cream sauce when we're back and all settled in. ;) Do you ship on dry ice via FedEx? If you, or anyone you know would like to be on a distribution list to get my email updates (this includes members of the choir, although if they have emailed me, I've already added them to the list), you can go to: http://lists.ofb.net/listinfo/bobwatch They have instructions there for subscribing. Look at how organized this is becoming. Aren't I lucky that Bob was with high tech guys when he fell? I am copying this to Amy and KPT in case they want to pass on the subscription info to the choir. Presumptuous, I know, but many people have asked to be kept in the loop. It is quite cathartic for me to write it all down. Take good care, and thank you so much for getting in touch. I hope to have better news for you soon. --Jacque From jacque@oz.net Sun Nov 3 07:50:24 2002 From: jacque@oz.net (jacque@oz.net) Date: Sun, 3 Nov 2002 00:50:24 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/2 Message-ID: <3155.166.128.54.100.1036309824.squirrel@www.oz.net> I drove to UMC today in a bit of a panic. Dick called me at the apartment, saying that there'd been a change of plans. Dr. Vater was not going to put on Bob's halo brace today. They need to talk to me, and won't give Dick any details. How soon can you get here, he asks, there are some papers they want you to sign? I hate surprises. On the way to the hospital, I call SICU on my cell and ask to speak to the nurse. No emergency, he says, we just have some papers for you to sign. Dr. Vater can explain when you get here. I arrive and they get Dr. Vater on the phone. He explains that Dr. Kavins, one of his associates, has reviewed Bob's case and thinks it would be best to do the C3 C4 repair as soon as possible. Bob has been on blood thinners, a common protocol for bedridden patients. They will discontinue that medication and do the surgery on Tuesday. While he is under anesthesia, they will also install the halo brace and perform fracture reductions on both wrists. They will do a anterior fusion between C3 and C4 to stabilize the cervical spine. The procedure (performed from the front--yikes!--through incisions on one or both sides of the windpipe) involves removing the damaged disk, putting a wedge of bone in its place and securing it with a titanium plate. Why wait? was Dr. Kavins' opinion. Given Bob's current incomplete quad status, it will be one less thing to worry about. It had been the pulmonologist's plan to extubate Bob today after the halo brace was installed. Since that was canceled, he will remain intubated until after his surgery on Tuesday. Apart from my sprint to the hospital this morning, it was a rather uneventful day. We did get a little imperious and called the nursing supervisor to report one caregiver, whom I'll call Cruella, who cared for Bob during daylight hours yesterday. Bitch or not bitch. You make the call. 1. Dick is in the room with Bob when Cruella comes in to give an injection. "What's he getting now?" Dick asks. "Medicine." she answers. Well, DUH. 2. Don is in the room when Cruella comes in to adjust Bob's IV drip. Leaning up over him, she complains in a loud voice how much her back hurts. How much HER back hurts? In full earshot of a patient with profound spinal trauma? 3. Bob starts to tremble. His blood pressure rises and his heart rate goes up, he cannot speak for himself but our most recent observations interpret that as pain. I tell him we know he's hurting, and I rest my cool hand on his forehead. Don leaves the room to look for a nurse. She comes in, exasperated, fork in hand (we must have interrupted her lunch), saying that she just GAVE him morphine a little while ago, he can't have any more yet. Maybe he's shivering from being cold. I am up at the head of his bed, massaging his temples, whispering in his ear, trying to calm him down. She, down at the foot of the bed, points to a blanket near his feet and says, "Well, you might want to spread that over him." I don't want to leave my soothing station. "Would you do it, please?" I ask, thinking YOU KNOW, she's his nurse and all. She did it with quite an attitude, sighing the whole time. "I'm on my break, you know, I just came in here because you called me!" Que perra. My friend Lynne T. sent me some jpegs, scanned from Christmas cards that BL, the kids and I have sent over the years. I was traveling when Bob was injured, so I have no photos with me. It is both wonderful and heartbreaking to see pictures of BL mobile and whole. I will be getting a printer soon for some of the paperwork and research that this event is producing, maybe I can print some of those to place in BL's line of vision. To remind him what he needs to recover for. Dick, Don and I hammered out our next month in Vegas. I'll be here the whole time, of course. Don is leaving tomorrow and will return next weekend. Lynne T. arrives Monday and leaves Thursday. Dick is leaving Tuesday and returns next Tuesday. Lisa and Carly may be arriving next weekend. Not finalized yet. Even under heavy sedation, Bob is communicating a bit more. It really makes a difference to have some response from him. Last night on my way out: I always kiss him goodnight (on the forehead and cheek) before I leave for the evening. Last night, I leaned in close to tease him. "You're going to be so envious," I said. "I'm going back to the apartment to eat junk food with your brother Don." Eyes still closed, he raised his eyebrows. "Hey! I saw that!" I said. "Do it again!" And he did. "Don't you wag your eyebrows at me! Bet you can't do it three times!" And he did. One. Two. Three. This is under sedation, on a ventilator. I skipped all the way out to the car. Maybe I will get my BL back after all. From jacque@oz.net Sun Nov 3 06:23:20 2002 From: jacque@oz.net (Reid Kneeland) Date: Sat, 2 Nov 2002 22:23:20 -0800 Subject: [Bobwatch] Scheduling visits Message-ID: <002301c28301$825af440$6928e043@rabbitz> This is a multi-part message in MIME format. ------=_NextPart_000_0020_01C282BE.7321FE80 Content-Type: text/plain; charset="Windows-1252" Content-Transfer-Encoding: quoted-printable Hi, everyone. I'm Ellen Fleischmann, Jacque and Bob's friend from Los = Angeles. This message is for those of you interested in supporting Jacque and Bob = while they're in Las Vegas. I thought that it might be a good idea to = coordinate visits so that there are no long periods without loved ones, = or lots of people all at once. If you're thinking about going, please e-mail me your possible travel = dates, and I'll try to spread people out over the next month or so. If = you've already locked in dates, please let me know that, too. We're all praying for Bob's full recovery, and for strength and courage = for the whole Lord clan. Sincerely, Ellen F. ------=_NextPart_000_0020_01C282BE.7321FE80 Content-Type: text/html; charset="Windows-1252" Content-Transfer-Encoding: quoted-printable
Hi, everyone.  I'm Ellen Fleischmann, Jacque and Bob's friend = from Los=20 Angeles.
 
This message is for those of you = interested=20 in supporting Jacque and Bob while they're in Las Vegas.  I = thought=20 that it might be a good idea to coordinate visits so that there are no = long=20 periods without loved ones, or lots of people all at once.
 
If you're thinking about going, please = e-mail me=20 your possible travel dates, and I'll try to spread people out over the = next=20 month or so.  If you've already locked in dates, please let me know = that,=20 too.
 
We're all praying for Bob's full = recovery, and=20 for strength and courage for the whole Lord clan.
 
Sincerely,
 
Ellen F.
------=_NextPart_000_0020_01C282BE.7321FE80-- From jacque@oz.net Sun Nov 3 19:28:29 2002 From: jacque@oz.net (jacque@oz.net) Date: Sun, 3 Nov 2002 12:28:29 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/3 Part I Message-ID: <3046.166.128.54.100.1036351709.squirrel@www.oz.net> We are now one week into Bob's recovery. I am still in such a state of shock--my ability to deal with this comes and goes. I keep waiting to wake up and find it was all a mistake. How can this be? Bob? You know Bob. Not invincible by any means, but isn't he the most unlikely guy for this to happen to? Nary a foolhardy bone in his body! It was just a week ago that I was parked in front of my friend Lanne's house in Ballard. My kids had just finished a play date; I was picking them up after having brunch with a friend. I buckled Simone into her car seat, and put my key in the ignition, and then my cell phone rang. It was Dan. At first I thought he was kidding. I don't know what I would have done if I'd been anywhere else when the call came in. As it was, I immediately pulled my kids from the car and ran back into the house. They resumed playing and I told Lanne the news, crying and shaking. I used her land phone to call directory assistance and then the hospital. She used another line cell to book our Las Vegas flights. I was not prepared for what I found when they walked Bassam and me into Trauma. Bob had been at the hospital for 8 hours. They were moving him to a gurney for transport to MRI. He did not know we were there. I was too stunned to even talk. I mean, that was NOT my husband. But it was. Each time they shifted him, he complained about his arms--shooting pains left side, he kept saying. Shooting pains right. They only had room for one of us, so Bassam went home and I rode in the ambulance with Bob--the slowest, most gentle 1 1/2 blocks any paramedic has ever driven--and then sat in the waiting room for the 90 minutes it took to image him. It was only on the ride back that broke out of my shock and spoke up. "BL, do you know I'm here?" I asked. "I do now." He was alert Sunday and Monday---declining pain medication nearly every time it was offered. He wanted to be clear. He gave me quite a few action items---people to call, banking to do--exhausted, flat on his back, paralyzed from the chest down, in a neck brace. It is memories of these few hours that give me hope that, regardless of where the body ends up, he'll still have the brain. He kept asking where the doctors were, why weren't they taking more action on his treatment. He was mostly present, I think, and didn't seem too different mentally, except for a few difficulties with time frame. A time or two, he wondered if we'd called 911 yet. Later, he was angry no physical progress had been made in the 70 hours since he'd been airlifted...and it hadn't even been 24. But since Monday night, when he went into surgery, I haven't been able to talk with him. He's been sedated. And intubated. They tell there is an amnesia-like quality to many of the drugs. I hope so. This is such a violation. Every day, I gain more of an understanding about the severity of his injuries. I know more about his medications...about the little specialists he's seen who evaluate things that I never hear about. As his next of kin, I am able to read his medical chart---but only because he is unable to give his consent. I insisted they dig hard and deep in medical record protocol to find that provision. At first, they were saying I couldn't. If he wakes up and says "no," which I don't think he will...then I'll be back in the dark. John is coming next weekend to help get me settled in my next housing location. I so appreciate his help---but yes, I'm a kept woman. Sucks. Sucks. Sucks. When I'm in the room with BL, I have action items, so it's not so hard. His eyes are almost always closed. I read to him, sing sometimes, write emails and talk with the nurses. He's sunk deep in some nether state but still knows I'm there. He can sometimes respond to the things I say, raising his eyebrows, fluttering his lids. His Dad and brother say that his heart rate and blood pressure calm when I talk to him. For some reason that really makes me happy. Maybe tomorrow I'll go buy a few pieces of clothing. I only have four outfits with me, I was traveling when I got the news. I've been washing stuff in the sink, but even so...not nearly enough cloth. My California end-of-summer clothes aren't cutting it on desert nights, especially coming out of the hospital at 2 or 3 in the morning. Sorry. I'm babbling. Hey, Carly (13) called me on the phone last night amazed at the unfairness of it all. Johnny Knoxville (that Jackass guy?)makes millions tossing himself in harms way and her Dad goes quad from a single weekend outing. Shit shit shit. His Dad just called to say that Bob is more alert this morning. Don is packing his truck with Bob's things to take back to California. When that's done, we'll go go the hospital. I'll have more later after I see Bob. Take care-- Jacque From jacque@oz.net Mon Nov 4 07:17:56 2002 From: jacque@oz.net (jacque@oz.net) Date: Mon, 4 Nov 2002 00:17:56 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/3 Part 2 Message-ID: <3022.166.128.54.100.1036394276.squirrel@www.oz.net> A somewhat quiet day for Bob. Dick was with him 10-6; I arrived around noon and am still here. He had many more alert periods today, lots of eye contact. Realize that Bob is flat on his back and cannot turn his head. We have to lean directly over him to look into his eyes. They have decreased the number of respirations per minute on his ventilator. It is set for 8, and Bob averages around 11. It is good to see him breathing on his own. Tomorrow they will lower it to 6. A feeding tube was introduced around 5:45p. Tonight's menu was Probalance, dosages: Rate 20. Goal 60. Hey, I just writes what I reads off the bag. This is the first food in his stomach since early the morning of his fall. The CT contrast imaging fluid of last Sunday and Monday made him quite sick to his stomach; this new stuff is going down just fine. Blood sugar levels are higher than earlier (low 170s instead of low 150s), a consequence of the glucose in the Probalance. He got a belly shot of two doses of Insuline for that problem. The Probalance is designed to give him additional fortification for the marathon surgery session to come. Like Bob, we are all gathering up our energy for Tuesday, when he will undergo the triple whammy of C 3/4 cervical fusion, Halo brace & bilateral wrist reductions. The white board in Bob's room says: Your Nurse Today Is : Martin Today's Goal Is: 1. Afebrile 2. Maintain spinal precautions Martin is a tall, red-headed man with freckly skin and a lovely Scottish accent. Just a kick-ass nurse. Explains everything he's doing to Bob, and gives lots of medical background. Take notes, though---he gives pop quizes throughout the day. Bob is responding well to him. Not surprising given his fondness for things Scottish...McDonalds. Tartans. Groundskeeper Willie. Annie Lennox. When I get to this last one, Martin laughs. "Ah, Jacque," he says, "do you think your husband will care about the difference between a Glasgow and an Edinburgh accent?" With the increased alertness, though, comes more movement. Bob is now given to slight nods in either axis to indicate yes and no. We are asking him to communicate with his eyes or brows. After all, Job One is keeping his neck as still as possible. (See #2 above.) Bob had some amazing ranges in heart rate today. Several times, his pulse would shoot up (from 75-->125 just like that) even after a recent dose of pain killer. What gives? We got our answer. Here is a quick lesson from BL in how frustrating it is not to be able to talk. I brought his little Sony Vaio to the hospital today. I needed to get help from Dick on understanding Bob's bill paying and money management setups in Quicken 2001. It's not going to do anyone any good if I'm late on mortgage, rent and cell phone payments. I thought we were being quiet enough, but obviously not. A few minutes into our session, I glanced up at Bob's monitor to see the heart rate escalating. I stood up and went to his side. "BL," I said, "your heart rate is really high. Are you having pain?" A quick shake no. "Don't move your head. Raise your eyebrows for yes, do nothing for no. Are you upset because we're messing with your computer?" Another quick shake no. "PLEASE, don't move your head. Are we bothering you with noise?" Eyebrows stationary. "Oh. You hear us struggling through Quicken and you're frustrated you can't say anything to help." Prolonged eyebrow raise. Ah, the subtleties of nonverbal communication. I spoke with both Carly and Graham on the phone today. They are both having a hard time with Bob's injury, and my absence. They are struggling in their own individual ways. That is to be expected, I guess. I broke the news to Graham (9) about Bob's permanent paralysis. Carly already knows. The news made him very sad. Me too. I cried on the phone. He didn't. Graham wondered when he could have time with his Dad, whom he hasn't seen since 10/22. The age restrictions for visitors are more relaxed in Surgical ICU. I will wait for Bob to be extubated and talking before bringing the younger kids to see him. Don left this morning. I go home tonight to an empty apartment. Lynne T. arrives tomorrow evening. I have the beginnings of a sore throat and sniffly nose. Guess a week of no sleep and poor nutrition catches up with you. And let's not even talk about STRESS... Of course, my discomforts are inconsequential as compared with Bob's. So I'll shut the hell up. I hope you have some peace in your own lives. Thank you all for shouldering a portion of our pain. Until next time-- Jacque From jacque@oz.net Mon Nov 4 09:04:27 2002 From: jacque@oz.net (jacque@oz.net) Date: Mon, 4 Nov 2002 02:04:27 -0700 (MST) Subject: [Bobwatch] From Kelvin Message-ID: <3140.166.128.54.100.1036400667.squirrel@www.oz.net> -------- Original Message -------- Subject: Re: (no subject) From: Date: Mon, November 4, 2002 12:52 am To: Kelvin, this is beautiful. What a gift you have. I, too, am haunted by my mind pictures of vertical Bob. We've been a couple since he was 19. I have wanted for nothing since he came into my life. What am I to do now? For most of last week, I have been well supported by the companionship of Bob's father and brother. Not that it's been all fun and games....three Lord men, and the most charming one is sedated and unable to speak. (And if Bob is the most charming one, what does that say about his family?) May I please post what you wrote to the entire list? > Jacque, we appreciate the reports. I can't escape the images. they > toggle between one another like a garrish flipflop billboard - Bob > wielding a hammer, Bob prone inert. Bob diving for a racquetball, > prone inert. imminently active/ imminently innert. this sucks and i'm > a thousand miles distant - I'm pissed I can't change it for you. > > How is this story not on cnn, wolf blitzer dispassionately abreasting > the country, the world, with hourly reports, the political background, > the ethno-geo-socio implications. The middle east, bali, > asterick-istan - more important? > > I want to build a device which, wanded over the infirm will rebuild > parts. a spock mind melder. a machine that translates brainwaves to > english. a keyboard operated with eyebrows, or trigger > characters/words ala a pilots heads-up display. a white board. one > eyebrow for yes, two for no. three for get me the hell out of here. > > I want to give Bob another shot at racquetball. I want to challenge > him to beat me. taunt him. challenge him. weanie. basketball. ping > pong. anything but imperial age. he'll do it. he'll work back, accept > the challenge, achieve the objective, embrace the challenge. he'll > slam the winning shot. he'll howl in victory. he'll win. From jacque@oz.net Mon Nov 4 03:36:30 2002 From: jacque@oz.net (RICHARD LORD) Date: Sun, 3 Nov 2002 19:36:30 -0800 Subject: [Bobwatch] Scheduling visits References: <002301c28301$825af440$6928e043@rabbitz> Message-ID: <002001c283b3$98f876c0$f43bfea9@rtl> This is a multi-part message in MIME format. ------=_NextPart_000_0017_01C28370.4ED2AA40 Content-Type: text/plain; charset="Windows-1252" Content-Transfer-Encoding: quoted-printable Ellen - I'm Bob's dad. I just finished my turn at the hospital with Bob. = Jacque is with him now until they kick her out in the wee hours of the = morning. I'll return later in the morning at the onset of visiting = hours. Barring unforeseen events, my schedule will be one week here in Las = Vegas with Bob and the next week tending to my small business in = Seattle, for the duration of Bob's stay here. I leave for Seattle on = Tuesday, November 5. I'll fly back to Las Vegas on Tuesday, November = 12, and so on. My wife, Julie, is in Palo Alto at Bob and Jacque's home with the = grandkids and will most likely stay there until Bob and Jacque return to = the Bay Area. Of course, if something unexpected happens, I'll change my plans = immediately. Thanks for your help. Best regards, Dick Lord ---- ----- Original Message -----=20 From: Reid Kneeland=20 To: bobwatch@lists.ofb.net=20 Sent: Saturday, November 02, 2002 10:23 PM Subject: [Bobwatch] Scheduling visits Hi, everyone. I'm Ellen Fleischmann, Jacque and Bob's friend from Los = Angeles. This message is for those of you interested in supporting Jacque and = Bob while they're in Las Vegas. I thought that it might be a good idea = to coordinate visits so that there are no long periods without loved = ones, or lots of people all at once. If you're thinking about going, please e-mail me your possible travel = dates, and I'll try to spread people out over the next month or so. If = you've already locked in dates, please let me know that, too. We're all praying for Bob's full recovery, and for strength and = courage for the whole Lord clan. Sincerely, Ellen F. ------=_NextPart_000_0017_01C28370.4ED2AA40 Content-Type: text/html; charset="Windows-1252" Content-Transfer-Encoding: quoted-printable
Ellen -
 
I'm Bob's dad.  I just finished my = turn at the=20 hospital with Bob.  Jacque is with him now until they kick her = out in=20 the wee hours of the morning.  I'll return later in the morning at = the=20 onset of visiting hours.
 
Barring unforeseen events, my schedule = will be one=20 week here in Las Vegas with Bob and the next week tending to my small = business=20 in Seattle, for the duration of Bob's stay here.  I leave for = Seattle on=20 Tuesday, November 5.  I'll fly back to Las Vegas on Tuesday, = November 12,=20 and so on.
 
My wife, Julie, is in Palo Alto at Bob = and Jacque's=20 home with the grandkids and will most likely stay there until Bob and = Jacque=20 return to the Bay Area.
 
Of course, if something unexpected = happens, I'll=20 change my plans immediately.
 
Thanks for your help.
 
Best regards,
 
Dick Lord
----
----- Original Message -----
From:=20 Reid=20 Kneeland
Sent: Saturday, November 02, = 2002 10:23=20 PM
Subject: [Bobwatch] Scheduling=20 visits

Hi, everyone.  I'm Ellen Fleischmann, Jacque and Bob's friend = from Los=20 Angeles.
 
This message is for those of you = interested=20 in supporting Jacque and Bob while they're in Las Vegas.  I = thought=20 that it might be a good idea to coordinate visits so that there are no = long=20 periods without loved ones, or lots of people all at = once.
 
If you're thinking about going, = please e-mail=20 me your possible travel dates, and I'll try to spread people out over = the next=20 month or so.  If you've already locked in dates, please let me = know that,=20 too.
 
We're all praying for Bob's full = recovery, and=20 for strength and courage for the whole Lord clan.
 
Sincerely,
 
Ellen = F.
------=_NextPart_000_0017_01C28370.4ED2AA40-- From jacque@oz.net Mon Nov 4 23:17:52 2002 From: jacque@oz.net (Lord, Don L.) Date: Mon, 4 Nov 2002 15:17:52 -0800 Subject: [Bobwatch] Scheduling visits Message-ID: <7160A38DA0DAD411A24E00010231B280694BC4@ASIMAIL> This message is in MIME format. Since your mail reader does not understand this format, some or all of this message may not be legible. ------_=_NextPart_000_01C28458.662E3D10 Content-Type: multipart/alternative; boundary="----_=_NextPart_001_01C28458.662E3D10" ------_=_NextPart_001_01C28458.662E3D10 Content-Type: text/plain; charset="iso-8859-1" Hi Ellen, I'm Bob's brother Don. I just left NV Sunday afternoon for the Bay Area. I'm not too big on flying so I drive to NV. My schedule is to drive to NV every weekend, leaving late Friday night or early Saturday morning to arrive at the beginning of visiting hours and leaving late Sunday night or early Monday morning and drive straight into work in Palo Alto, CA. This is all based upon no big changes in my brother's condition. I can leave at a moments notice from work, (I keep a travel bag with me at all times), my boss is very sympathetic. I'm saving-up to purchase an open-ended plane ticket in the event Bob's condition goes critical, I'll put my fears aside. I have a sleeping bag and air bed so accommodations are easy for me. I also can sleep in my truck, no problem I've done it many times (nice and comfy) - even have TV and laptop for DVDs. Thanks for your help in this difficult time. I look forward to meeting you and my brother's other friends. Best Regards, Don L. Lord <> ------_=_NextPart_001_01C28458.662E3D10 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable Re: [Bobwatch] Scheduling visits

Hi Ellen,

    I'm Bob's = brother Don. I just left NV Sunday afternoon for the Bay Area. I'm not = too big on flying so I drive to NV. My schedule is to drive to NV every = weekend, leaving late Friday night or early Saturday morning to arrive = at the beginning of visiting hours and leaving late Sunday night or = early Monday morning and drive straight into work in Palo Alto, CA. = This is all based upon no big changes in my brother's condition. I can = leave at a moments notice from work, (I keep a travel bag with me at = all times), my boss is very sympathetic. I'm saving-up to purchase an = open-ended plane ticket in the event Bob's condition goes critical, = I'll put my fears aside. I have a sleeping bag and air bed so = accommodations are easy for me. I also can sleep in my truck, no = problem I've done it many times (nice and comfy) - even have TV and = laptop for DVDs. Thanks for your help in this difficult time. I look = forward to meeting you and my brother's other friends.

Best Regards,

Don L. Lord
<<Lord, Don = L..vcf>>

------_=_NextPart_001_01C28458.662E3D10-- ------_=_NextPart_000_01C28458.662E3D10 Content-Type: application/octet-stream; name="Lord, Don L..vcf" Content-Disposition: attachment; filename="Lord, Don L..vcf" BEGIN:VCARD VERSION:2.1 N:Lord;Don FN:Lord, Don L. ORG:Applied Solutions, Inc.;Sales TITLE:Account Manager NOTE:Account Manager TEL;WORK;VOICE:(650)210-8844 ADR;WORK;ENCODING=QUOTED-PRINTABLE:;MV;719 North Shoreline Blvd.,=0D=0ASuite 470;Mountain View;CA;;USA LABEL;WORK;ENCODING=QUOTED-PRINTABLE:MV=0D=0A719 North Shoreline Blvd.,=0D=0ASuite 470=0D=0AMountain View, CA=0D= =0AUSA EMAIL;PREF;INTERNET:dllord@iAppliedSolutions.com REV:20021009T041600Z END:VCARD ------_=_NextPart_000_01C28458.662E3D10-- From jacque@oz.net Tue Nov 5 10:02:40 2002 From: jacque@oz.net (jacque@oz.net) Date: Tue, 5 Nov 2002 03:02:40 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/4 Message-ID: <3079.166.128.54.100.1036490560.squirrel@www.oz.net> Bob will have his Triple Crown surgery--cervical fusion, halo brace, wrist reductions-- at 4p tomorrow (Tuesday). A quiet, uneventful day for BL. He is tolerating the tube feeding well. He had several bouts of coughing--this is bizarre in an intubated person. He has the appearance of a cough--chest convulsions--but no sound. He was suctioned several times. Late in the afternoon, a drop in blood pressure. Systolic lunged from 140s to 90s. Nurse Martin to the rescue. A new IV and bag o' goo for BL. Lynne T. and I will return to the hospital tomorrow morning at 10 for the start of visiting hours. This morning shift has, up to now, been covered by Dick. I am not a morning person (especially getting to bed so late), but anything for the beau. Dick said goodbye to Bob tonight. He will return in a week. I could tell he was sad to leave his boy. Lynne arrived this evening from SFO--I picked her up at McCarran and we went straight to the hospital. I tried to prepare her for Bob's pathetic state. She said he didn't look as bad as she'd imagined. Bob smiled at the sound of her voice. When I stepped out for dinner, she sat next to Bob and told him how strong I was being, how well I was holding up. I love it when she lies like that. Lynne coordinated the musicians for our wedding in '91, sang a beautiful solo and conducted a choir of my women friends. During her college years, she was the choral director at a small Unitarian Church in Canoga Park. I met her during my short-lived foray into that religion. She took me on as a voice student, too, but we usually skipped arias in favor of margaritas. Bob and I enjoyed having her over for dinner and treated her to the occasional tank of gas for her car. In return, she doted on our toddler Carly and delighted us with her tales of Music Majors Gone Wild! Ventilator lowered to 5 breaths per minute. BL averaging 11. Excellent. With Lynne on sentry, I walk to the cafeteria for dinner. Closed. I can't decide between Wendy's and Carl's Junior. Out on W. Charleston, an elderly gentlemen is staring up at the hospital in confusion. I ask if I can help. He needs to get to Trauma. His "lady" has been in a car accident. He is not supposed to drive after dark but felt he had no choice once he got the news. He is Kojak bald with gold chains around his neck. His velour jogging suit is unzipped to reveal several inches of curly gray chest hair. I offer Mr. Vegas an escort to that part of the hospital. I am intimately familiar with the route. By the time I get him to the security desk, I no longer want a real dinner. I grab some snack food from my car and eat it on the hallway floor near the SICU elevator. Today I received a box of candy and books from Lynn H. Another delivery was a box of fruit from Roger A. Looks like my stale doughnut days are over. A slow news day for the Bobwatch. But you know what they say....slow news is good news. I'll know more after the surgery tomorrow. Like I said, starts at 4. Think good thoughts for my guy. Lynne and I will go shopping during the surgery to relieve my clothing shortages. She stays through Thursday. John arrives Wednesday and leaves Friday. My sister Lisa and my daughter Carly arrive Thursday night and leave Monday. I move to a new location Thursday. Bob's Mom, Grandma & Uncle Jim arrive Saturday. Don arrives Saturday. Don leaves Sunday. I'm exhausted just writing it. But support is good. Family is good. Just don't make me coordinate it. (Ellen is good.) Good night-- Jacque From jacque@oz.net Tue Nov 5 06:19:51 2002 From: jacque@oz.net (Reid Kneeland) Date: Mon, 4 Nov 2002 22:19:51 -0800 Subject: [Bobwatch] Visits, part 2 Message-ID: <005401c28493$5c26c9a0$4d2ae043@rabbitz> This is a multi-part message in MIME format. ------=_NextPart_000_0051_01C28450.4B85B860 Content-Type: text/plain; charset="Windows-1252" Content-Transfer-Encoding: quoted-printable Hello, all you who are friends and relations of Jacque and Bob. Based on the e-mails from Jacque, Richard Lord, Don Lord, Pammer, Gina = Handy, and Tom Marvin, here are the opportunities to come and give your = support: Nov. 11-12 =20 Nov. 25-26 Dec. 3-6 Dec. 9-10* Dec. 17-20.* *According to Jacque's e-mail of 11/1, Bob will be there another month, = so the later dates in December will (please, God!) not be necessary. = Given the randomness of previous events and the uncertain nature of even = a well prayed for recovery, I've included them. The Don and Richard Lord are covering weekends well. Richard is staying = a week at a time, leaving and arriving on Tuesdays. I've included = Tuesdays in the above dates so that Jacque and Bob can be sure to have = support regardless of Richard's flight times. =20 Please let me know when you will be coming to Las Vegas. Julie Lord is = watching their three children in Palo Alto. If any of you are wanting = to pinch-hit there, please let me know. =20 ------=_NextPart_000_0051_01C28450.4B85B860 Content-Type: text/html; charset="Windows-1252" Content-Transfer-Encoding: quoted-printable
Hello, all you who are friends and = relations of=20 Jacque and Bob.
 
Based on the e-mails from Jacque, = Richard Lord,=20 Don Lord, Pammer, Gina Handy, and Tom Marvin, here are the opportunities = to come=20 and give your support:
 
Nov. 11-12     =    =20    
Nov. 25-26
Dec. 3-6
Dec. 9-10*
Dec. 17-20.*
 
*According to Jacque's e-mail of 11/1, = Bob will=20 be there another month, so the later dates in December will (please, = God!) not=20 be necessary.  Given the randomness of previous events and the = uncertain=20 nature of even a well prayed for recovery, I've included = them.
 
The Don and Richard Lord are covering = weekends=20 well.  Richard is staying a week at a time, leaving and = arriving on=20 Tuesdays.  I've included Tuesdays in the above dates so that Jacque = and Bob=20 can be sure to have support regardless of Richard's flight times. =20
 
Please let me know when you will be = coming to=20 Las Vegas.  Julie Lord is watching their three children in Palo = Alto. =20 If any of you are wanting to pinch-hit there, please let me know. =20
------=_NextPart_000_0051_01C28450.4B85B860-- From jacque@oz.net Tue Nov 5 21:20:16 2002 From: jacque@oz.net (Gina Handy) Date: Tue, 05 Nov 2002 13:20:16 -0800 Subject: [Bobwatch] Re: Visits, part 2 Message-ID: Thanks for coordinating this. I would be happy to go to Las Vegas the week of Dec. 3-6, or to go to Palo Alto any time after Nov. 26. I'm available Tuesday morning (first flight) through Friday night (last flight). Anything on my calendar is minor (by comparison) and can be changed. Just let me know where I would be most helpful to Jacque and Bob. Gina Handy >From: "Reid Kneeland" >Reply-To: "Reid Kneeland" >To: ,"Jac" >Subject: Visits, part 2 >Date: Mon, 4 Nov 2002 22:19:51 -0800 > >Hello, all you who are friends and relations of Jacque and Bob. > >Based on the e-mails from Jacque, Richard Lord, Don Lord, Pammer, Gina >Handy, and Tom Marvin, here are the opportunities to come and give your >support: > >Nov. 11-12 >Nov. 25-26 >Dec. 3-6 >Dec. 9-10* >Dec. 17-20.* > >*According to Jacque's e-mail of 11/1, Bob will be there another month, so >the later dates in December will (please, God!) not be necessary. Given >the randomness of previous events and the uncertain nature of even a well >prayed for recovery, I've included them. > >The Don and Richard Lord are covering weekends well. Richard is staying a >week at a time, leaving and arriving on Tuesdays. I've included Tuesdays >in the above dates so that Jacque and Bob can be sure to have support >regardless of Richard's flight times. > >Please let me know when you will be coming to Las Vegas. Julie Lord is >watching their three children in Palo Alto. If any of you are wanting to >pinch-hit there, please let me know. _________________________________________________________________ Surf the Web without missing calls! Get MSN Broadband. http://resourcecenter.msn.com/access/plans/freeactivation.asp From jacque@oz.net Tue Nov 5 22:03:00 2002 From: jacque@oz.net (jacque@oz.net) Date: Tue, 5 Nov 2002 15:03:00 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/5 Part I Message-ID: <3028.166.128.54.100.1036533780.squirrel@www.oz.net> Lynne and I arrived in SICU at 10:30a. Sherri, Bob's day nurse, told me that his pre-surgical blood work looked fine--except two of the clotting factors were a bit low. If you recall, surgery was put off until today so the blood thinners could leave his system. Surgery is still planned for 4p. At 12:45p, they hung two units of B+ plasma. This should help replenish the clotting factors. Because Bob was a healthy and clean-living guy in his pre-accident life, his heart and circulatory system is strong and they can pump the blood products into him at a good clip with little fear of stressing his system. He began to shiver once they started the plasma...I know it's stored frozen, but hey! Slurpies in my guy's arteries? Sherri invited me over to touch the bag. Definitely room temperature. We put an extra blanket on BL. Bob has been quite alert since we got here. We've been talking the poor guy's ear off. I am a bit frantic to keep contact with him; I know the traumas of surgery and the post-anesthesia haze will make him unavailable once more for a few days. When Lynne and I arrived, we settled in and chatted "at" Bob for a few minutes. It is very hard to convince him not to shake his head in response to our questions. He has declined pain medication every time it's offered. Again, as in the pre-surgical period on Monday, he wants to be clear. After 30 minutes or so, I told Bob that I was going to head out to Mailboxes Etc. Lynne would stay with him. He shook his head "no." "Don't move your head, BL," I said. "I'll be back in just a few minutes." He shook his head "no" again. "You want me to stay?" A shake "yes." I can pick up the mail later. A few more minutes go by. "I'm going to step out to use the bathroom, BL. Lynne will be here until I come back." A quick shake "no." "Now I said don't shake your head! I really need to use the bathroom. You don't want me to go? You're kidding right?" Quick shake "no." "Not kidding. Well, I still have to go, but I'll make it quick then." How terrifying and extremely isolating to be at the complete mercy of whomever comes into your room. Bob is not one to get lonely easily. He's pretty much a intellectual round table all unto himself. He thrives on time alone. But this is different. He's hurting. Paralyzed. Intubated. Flat on his back for 10 days. Can't turn his head. I don't blame him for not wanting me to go. But a girl's gotta do... I sent my gracious servant girl Lynne to the corner Sav-on for supplies. Bottled water, Drixoral for my cold, film for my camera, push pins to put family pictures on the bulletin board in Bob's room. They should be able to sit Bob up once the halo is in place---we're trying to make his surroundings as humane as possible. Two gorgeous floral arrangements sit out on the nurses counter. We have a great view of them from Bob's room. Sure, other visitors pass by and read the tags to see if their loved one is the lucky recipient...but no, move on, Bucko, they're Bob's, all Bob's. Red rosebuds, sunflowers, lupine and daisies from Todd Rein, and alstromeria, pink roses, gerbera daisies and lilies from John Van Siclen and the Executive Team at Interwoven. Thank you so much for thinking of him. I should have more information after the surgery. Thanks for following his progress. Take care-- Jacque From jacque@oz.net Tue Nov 5 23:41:12 2002 From: jacque@oz.net (Edward Jung) Date: Tue, 5 Nov 2002 15:41:12 -0800 Subject: [Bobwatch] Clinical trial, medical references Message-ID: <1473BBD4AF96144DBA3F9527A4767F0D4517E2@mail.intven.com> I can do little but watch and hope as this unfolds, but one thing I want to do is to understand the medical care Bob is receiving. Can anybody answer the following questions? 1. Vater is Dr. Thomas Vater, at UMC? 2. What is Kavins' first name, specialty, and affiliation? 3. Following Bob's injury, did they (immediately) attempt to suppress inflammatory response (if using steroids, which ones)? Finally, I only bring this up due to the time sensitivity, but there is an experimental procedure called autologous macrophage therapy by a company looking for patients for clinical trial -- required that the injury is less than TWO weeks old. There are other requirements, but I don't know enough to determine if they apply: http://www.proneuron.com/ClinicalStudies/Participation.html Somebody closer to the situation please reply so I know somebody has considered (and perhaps rejected) this. I know this is a difficult time for family members to make decisions of this kind. Thanks. Edward From jacque@oz.net Wed Nov 6 00:32:53 2002 From: jacque@oz.net (Dan Egnor) Date: Tue, 5 Nov 2002 19:32:53 -0500 Subject: [Plaid] [Plaid-home] [Bobwatch] Clinical trial, medical references In-Reply-To: <1473BBD4AF96144DBA3F9527A4767F0D4517E2@mail.intven.com> References: <1473BBD4AF96144DBA3F9527A4767F0D4517E2@mail.intven.com> Message-ID: <20021106003253.GE9888@ofb.net> I talked to Jacque. She's taking a look at this and appreciates the lead. This is what she knows off the top of her head; she'll have to consult the charts for more detailed answers: On Tue, Nov 05, 2002 at 03:41:12PM -0800, Edward Jung wrote: > 1. Vater is Dr. Thomas Vater, at UMC? Yes. > 2. What is Kavins' first name, specialty, and affiliation? She doesn't recall his first name, but he is also a spinal surgeon at UMC, and works with Vater. He was brought in as the second opinion. > 3. Following Bob's injury, did they (immediately) attempt to suppress > inflammatory response (if using steroids, which ones)? They did. She doesn't know exactly at what point the treatment started or what drugs were used (again, she'll have to consult the charts); it would have been no later than his arrival at the hospital, and no sooner than when a medic was first able to rappel into the hole (and probably no sooner than when he was taken in the helicopter). He's been on the steroids since. > http://www.proneuron.com/ClinicalStudies/Participation.html She's looking at that now, and I expect she'll follow up with you directly. The schedule is tight; the injury happenned on Sunday 10/27, so the 14-day point is this coming Sunday. Dan From jacque@oz.net Wed Nov 6 02:08:18 2002 From: jacque@oz.net (Edward Jung) Date: Tue, 5 Nov 2002 18:08:18 -0800 Subject: [Bobwatch] Can ths list help me? WAS: Clinical trial, medical references Message-ID: <1473BBD4AF96144DBA3F9527A4767F0D4517ED@mail.intven.com> Thanks for the reply, Dan. (Looks like your reply-to is set to Jacque's email.) I have a few feelers out for doc and therapy recommendations, as well as opinions on Proneuron and Michal Schwartz. I hope the surgery has gone well. **I welcome anybody else's help on the list** to widen the data collection - through doctors you know or the Internet. [One prominent, although controversial, resource is Christopher Reeves' work both at his foundation (http://www.crpf.org/), and the resource center in partnership with the CDC and several other medical organizations (http://www.paralysis.org).] From jacque@oz.net Wed Nov 6 02:46:41 2002 From: jacque@oz.net (Wei-Hwa Huang) Date: Tue, 5 Nov 2002 18:46:41 -0800 Subject: [Bobwatch] Clinical trial, medical references In-Reply-To: <20021106003253.GE9888@ofb.net> References: <1473BBD4AF96144DBA3F9527A4767F0D4517E2@mail.intven.com> <20021106003253.GE9888@ofb.net> Message-ID: <20021106024641.GI28126@hurl.ugcs.caltech.edu> On Tue, Nov 05, 2002 at 07:32:53PM -0500, Dan Egnor wrote: > On Tue, Nov 05, 2002 at 03:41:12PM -0800, Edward Jung wrote: > > 2. What is Kavins' first name, specialty, and affiliation? > She doesn't recall his first name, but he is also a spinal surgeon at > UMC, and works with Vater. He was brought in as the second opinion. A search on UMC's website reveals this entry: KABINS, MARK MD Orthopedics 89106 (702) 8788370 This is probably him. From bobwatch@lists.ofb.net Wed Nov 6 09:49:32 2002 From: bobwatch@lists.ofb.net (bobwatch@lists.ofb.net) Date: Wed, 6 Nov 2002 02:49:32 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/5, Part II (long) Message-ID: <3029.166.128.54.100.1036576172.squirrel@www.oz.net> It is 11p. Bob is back in Bed 5 of SICU. He has completed the second of his spinal surgeries. It was decided that 3+ hours under anesthesia was enough this time. The wrists will wait for another day. He comes in and out of consciousness and will blink his eyes in response to a question. He has refused additional pain medication up to this point. He is making sucking and clicking sounds with his tongue—I am alarmed. He blinks “yes” to my question about his mouth being dry. I dip an oral swab into ice water and press it against his teeth, releasing a few drops to moisten his tongue. His appearance is less alarming than when he emerged from his 10/28 compression laminectomy. (That was the procedure to stabilize T2 through T7.) Then, the incision was much larger, the surgery much more prolonged. He’d been prone for over 6 hours and much fluid settled in his face, which had been propped in a circular support. Back in recovery, he looked like a prize fighter minus the bruising—puffy cheeks and forehead, eyes swollen nearly shut. This is the way our daughter Carly first saw him. “That is not my Dad,” she said resolutely. But of course she knew it was. This afternoon’s surgery was performed with Bob flat on his back. There is no facial swelling, but the halo brace is a harsh visual. It most resembles a long, white plastic V-necked vest. It is cinched at the waist and adjusted over the shoulders by black belt straps. It is lined with shearling wool for comfort. Four columns emerge from the vest, two in the front from clavicle to top of forehead, the two in the back mirroring the front. The halo itself is bolted to these supports, and also to Bob’s skull in four places: just above and slightly behind the top of each ear, and again ¾” above the crest of each eyebrow. The pins, as they are called, are slightly thinner than a pencil. It is painful for me to look at the places where they pierce the skin. Bob is a practical guy, and not the least bit vain. I wince when I look at the halo brace, but I bet he’d be impressed by the brute simplicity of the design. Don’t want someone to move their head? Bolt it down! He has a large bandage secured with gold translucent tape –it starts at the midline of his throat and continues underneath the left shoulder of his vest. Dr. Thomas Vater, the spinal surgeon, and Dr. Dan Link, the anesthesiologist, came to the waiting room at 8:45 p to meet with me after the surgery. My friend Lynne took notes. Again, Vater commented on how infrequently he sees someone with this extreme level of spinal trauma. The anesthesiologist concurred. Vater said it is also unusual to have extensive damage in both the C-spine and T-spine from a single event. When Bob fell, his neck snapped forward with such ferocity that all the ligaments were torn and the disc between C3 and C4 was completely expelled. During surgery, Vater plucked out the spent disc and fused the two vertebrae. Sadly, there is spinal cord injury at C3/4. Vater believes the cord may not be completely compromised—Bob did manage trace shoulder and slight finger movement when he was first brought into Trauma 10/27. Needing a layman’s explanation, I offered this one and Vater OK’d it. Consider the spinal cord as a bundle of fiber optics. Most are sliced at C3/4, but a few remain intact and can still transmit. By stabilizing the C-spine and continuing steroid therapy, we aim to reduce the swelling, which has the potential to destroy whatever cord function Bob may have left at that location. So, until we see otherwise, Bob is still classified “incomplete quad.” I asked about long term improvements---when would we know for sure what his level of disability is going to be? Vater gave the loose estimation of one full year post injury---the capabilities he has at that point are the ones he’ll most likely keep for the rest of his life. I asked about breathing difficulties in quadriplegics. So far, Bob has shown us that he is capable of breathing on his own. The rib fractures and paralyzed chest muscles make it difficult, but the process is still there. The phrenic nerve, which controls the diaphragm, is associated with C3, C4 and C5. That nerve is obviously still functional. I personally do not understand the mechanism of the phrenic nerve, if it is part of the spinal bundle or differently connected. I would appreciate anyone with medical knowledge illuminating this point for me. We asked about Bob’s vision. He complained of right field vision deficit on the morning of the 29th, about 6 hours after his first surgery. I will have to recheck the chart to see if he had similar complaints when he was first admitted. Bob’s ophthalmologist consult of 10/29 states: “Dilated fundoscopic exam revealed no optic disk pallor in either eye, no disc or peripapillary hemorrhage in either eye.” They are trying to rule out PION---posterior ischemic optic neuropathy. They tell me this can result from prolonged periods of low blood pressure. During both surgeries, Dr. Link said that Bob’s blood pressure was within acceptable limits. A drop in blood pressure is a common response to severe spinal injury, however. It is possible the damage occurred during the several hours Bob awaited rescue at the bottom of the mine shaft. So this is certainly a lot of bad news at one time. Guess I’m kinda getting used to it. To be fair, the surgery only verified things we already suspected. Dr. Vater was the surgeon who did the fusion, Dr. Kabins (not Kavins as I wrote previously) was called in for consult prior to the surgery. Mid-afternoon, Bob’s nurse Sherri puttered around like a cheerful den mother prepping him for surgery. When the orderlies arrived to transfer him downstairs, Lynne and I stood back and let them do their work. All bags, bottles and portable monitors were transferred to his bed. Identity ankle bracelet checked again and again to make sure they had the right guy. Tubing disconnected from the ventilator and attached to an oxygen tank. One nurse assigned to manually “bag him” until he was reconnected in the operating room. Then someone unplugged the Flexcar bed and the air mattress began to deflate. Bob started sinking into the center like Johnny Depp in “Nightmare on Elm Street.” A slightly flustered chain of events occurred in which the bed was plugged in anew, inflated to its maximum capacity, a spinal board placed gingerly under BL, and then unplugged again. Supported in that fashion, he sunk to the bottom of the bed with no changes to his spinal position. Once he left for surgery, Lynne and I went out to run a few errands. It would be impossible for me to sit in a waiting room for the duration of the surgery; I’d be climbing the wells. We braved several stores at the Fashion Show Mall. I came away with a few items of clothing. Normally, I would rather eat glass than go shopping but the distraction was welcome. We then drove the scenic route down Las Vegas Blvd. to Charleston. Stopping by Mailboxes, etc., we picked up get-well wishes. Hey, SPM-ers, thank you for your wonderful words of encouragement. We then had fair-to-poor quality Chinese food at a restaurant in the same strip mall. We returned to UMC and waited less than 30 minutes for Vater and Link to emerge from recovery. Couldn’t have timed it better if we planned it. It is now 12:40a. Bob appears to be resting comfortably. I do not know what tonight will bring, and I do not want to leave him---who will hear his smallest distress signal and run for the nurse? But we need our sleep, too. Lynne and I will be back at the start of visiting hours to chat with and advocate for Bob. Get to bed, Bobwatchers. It’s late. Take care— Jacque From bobwatch@lists.ofb.net Wed Nov 6 04:37:15 2002 From: bobwatch@lists.ofb.net (John Rinaldo) Date: Tue, 5 Nov 2002 20:37:15 -0800 Subject: [Plaid] [Plaid-home] [Bobwatch] Visits, part 2 In-Reply-To: <005401c28493$5c26c9a0$4d2ae043@rabbitz> Message-ID: <000401c2854e$2fa91a70$8d837cce@VAIO> This is a multi-part message in MIME format. ------=_NextPart_000_0005_01C2850B.2185DA70 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit Just a quick note. I have reserved a two-bedroom suite for Jacque to stay in (at least from Nov. 7 to Dec. 7). So those of you who need a place to stay while visiting may want to coordinate to take the extra bedroom at Jacque's place. John -----Original Message----- From: plaid-admin@lists.ofb.net [mailto:plaid-admin@lists.ofb.net] On Behalf Of Reid Kneeland Sent: Monday, November 04, 2002 10:20 PM To: Bobwatch@lists.ofb.net; Jac Subject: [Plaid] [Plaid-home] [Bobwatch] Visits, part 2 Hello, all you who are friends and relations of Jacque and Bob. Based on the e-mails from Jacque, Richard Lord, Don Lord, Pammer, Gina Handy, and Tom Marvin, here are the opportunities to come and give your support: Nov. 11-12 Nov. 25-26 Dec. 3-6 Dec. 9-10* Dec. 17-20.* *According to Jacque's e-mail of 11/1, Bob will be there another month, so the later dates in December will (please, God!) not be necessary. Given the randomness of previous events and the uncertain nature of even a well prayed for recovery, I've included them. The Don and Richard Lord are covering weekends well. Richard is staying a week at a time, leaving and arriving on Tuesdays. I've included Tuesdays in the above dates so that Jacque and Bob can be sure to have support regardless of Richard's flight times. Please let me know when you will be coming to Las Vegas. Julie Lord is watching their three children in Palo Alto. If any of you are wanting to pinch-hit there, please let me know. ------=_NextPart_000_0005_01C2850B.2185DA70 Content-Type: text/html; charset="us-ascii" Content-Transfer-Encoding: quoted-printable Message
Just a=20 quick note. I have reserved a two-bedroom suite for Jacque to stay in = (at least=20 from Nov. 7 to Dec. 7). So those of you who need a place to stay while = visiting=20 may want to coordinate to take the extra bedroom at Jacque's=20 place.
 
John
-----Original Message-----
From:=20 plaid-admin@lists.ofb.net [mailto:plaid-admin@lists.ofb.net] On = Behalf Of=20 Reid Kneeland
Sent: Monday, November 04, 2002 10:20=20 PM
To: Bobwatch@lists.ofb.net; Jac
Subject: = [Plaid]=20 [Plaid-home] [Bobwatch] Visits, part 2

Hello, all you who are friends and = relations=20 of Jacque and Bob.
 
Based on the e-mails from Jacque, = Richard=20 Lord, Don Lord, Pammer, Gina Handy, and Tom Marvin, here are the = opportunities=20 to come and give your support:
 
Nov. 11-12    =20        
Nov. 25-26
Dec. 3-6
Dec. 9-10*
Dec. 17-20.*
 
*According to Jacque's e-mail of = 11/1, Bob=20 will be there another month, so the later dates in December will = (please,=20 God!) not be necessary.  Given the randomness of previous events = and the=20 uncertain nature of even a well prayed for recovery, I've included=20 them.
 
The Don and Richard Lord are = covering weekends=20 well.  Richard is staying a week at a time, leaving and = arriving on=20 Tuesdays.  I've included Tuesdays in the above dates so that = Jacque and=20 Bob can be sure to have support regardless of Richard's flight = times. =20
 
Please let me know when you will be = coming to=20 Las Vegas.  Julie Lord is watching their three children in Palo=20 Alto.  If any of you are wanting to pinch-hit there, please let = me=20 know. 
------=_NextPart_000_0005_01C2850B.2185DA70-- From bobwatch@lists.ofb.net Wed Nov 6 16:51:04 2002 From: bobwatch@lists.ofb.net (bobwatch@lists.ofb.net) Date: Wed, 6 Nov 2002 11:51:04 EST Subject: [Bobwatch] The Bob Report 11/5, Part II (long) Message-ID: <53.1eec3cf1.2afaa278@aol.com> Hi Jacque Sounds like Bob came through the big surgery very well - quite a feat in itself, if I understand the complicated nature of the surgery. Glad to hear he's resting. What a difficult thing to continue to deal with the uncertain prognosis - you are incredibly strong Jacque! I know this is a few weeks in the future, but Carolyn & I will be in the Bay Area at the end of December. If you and Bob are back in Palo Alto then, we would love to connect up with you and pass on some real hugs (these cyberspace ones are a poor substitute for the real thing!) Please tell Bob that all of SPM is pulling for him - and sending their love and support to both of you. Best positive thoughts zooming your way, Karen From bobwatch@lists.ofb.net Wed Nov 6 20:19:38 2002 From: bobwatch@lists.ofb.net (Lynne Trainor) Date: Wed, 6 Nov 2002 12:19:38 -0800 (PST) Subject: [Bobwatch] Helping the (Deerr-) Lord Family Message-ID: <20021106201938.50572.qmail@web14108.mail.yahoo.com> Hello Bobwatch Subscribers: I'm here in Las Vegas with Jacque and Bob. Under the circumstances, they are doing incredibly well. I am so proud of them both. Jacque is handling this heartbreaking experience with strength and dignity. Many of the doctors have expressed their amazement at how well Bob is recovering, given the extent of his injuries. We all know that they are up for the challenges that face them. I am trying to assist Jacque with the business side of the (Deerr-) Lord family. As we have no idea when any type of disability payments etc., may arrive it has occurred to me that they would benefit from an immediate infusion of cash. Many of you have asked how you can be of assistance. I have spoken with my financial advisor and he will assist with the creation of trust funds to benefit the family specifically, as well as college trust funds for the children. I am certain that if we ease Bob's concern regarding the welfare of his family, it will surely aid his recovery. If you would like to offer assistance in this manner, a check can be sent to Jacque at her Mailboxes, etc. address: 840 S. Rancho Drive, Suite 4-105 Las Vegas, NV 89106-3820 I have asked Jacque's permission to send this email, and she has gratefully and humbly accepted. I will forward additional trust information as it is received. Please contact me at lynnetrainor@yahoo.com with any questions or suggestions. Regards, Lynne __________________________________________________ Do you Yahoo!? HotJobs - Search new jobs daily now http://hotjobs.yahoo.com/ From bobwatch@lists.ofb.net Wed Nov 6 20:20:26 2002 From: bobwatch@lists.ofb.net (Mona Lucitt) Date: Wed, 6 Nov 2002 12:20:26 -0800 Subject: [Bobwatch] Santa Valley Medical Center SCI Message-ID: Having had a bro-in-law in spinal rehab (w/halo screwed in his head too) I have had a some experience with the wonderful folks at the Santa Clara Medical Center (in San Jose on Bascom). Here is their website http://www.tbi-sci.org/main.html with a wealth of information and services available. Keep the faith and our prayers are with you all. - Gratefully, Mona PS. Maybe you can play some music on head phones for Bob, this soothed my brother-in-law for many lonely hours. A wise man is mightier than a strong man, and a man of knowledge than he who has strength. (Proverbs 24:5) From bobwatch@lists.ofb.net Thu Nov 7 02:34:45 2002 From: bobwatch@lists.ofb.net (mfunderhill) Date: Wed, 6 Nov 2002 21:34:45 -0500 Subject: [Bobwatch] (no subject) Message-ID: <003e01c28606$3f95c1a0$d9804942@compaq> This is a multi-part message in MIME format. ------=_NextPart_000_003B_01C285DC.5367B500 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable Hi There, Just wanted you to know we're thinking about you and Bob. Take care of = yourself. Love Aunt Merry & Uncle Doc ------=_NextPart_000_003B_01C285DC.5367B500 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable
Hi There,
 
Just wanted you to know we're thinking about you and = Bob.  Take care of yourself.
 
Love Aunt Merry & Uncle = Doc
------=_NextPart_000_003B_01C285DC.5367B500-- From bobwatch@lists.ofb.net Thu Nov 7 10:15:43 2002 From: bobwatch@lists.ofb.net (bobwatch@lists.ofb.net) Date: Thu, 7 Nov 2002 03:15:43 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/6 Message-ID: <3058.166.128.54.100.1036664143.squirrel@www.oz.net> First things first. Bob had his wrist surgery tonight. Wow. We didn’t find out it was scheduled until just a few minutes before. Took all of us (including the Surgical ICU nurses) completely by surprise. Nurse Carol walks in at 4:40p: “Mrs. Lord, do you know if Robert is having wrist surgery today? They’re calling for him in the OR.” I’m no genius, but I know one thing: if the OR is calling you, PICK UP THE DAMN PHONE! Ahem. So we didn’t have much notice before they came to roll him away. No real prep required on this floor: his stomach was already empty from his surgery last night. Blood work was current from surgery last night. All tubes, controls, monitors and IVs were ready because of surgery last night. The bed deflated rapidly just like it did before surgery last night. (This time, no frantic scrambling. Bob’s T- and C-spines are properly immobilized by the halo brace.) We were even treated to one of the same orderlies who rolled him to …say it with me, people….SURGERY LAST NIGHT. Sorry for shouting. But this is a lot of violation for Bob, in a very concentrated time frame. I’m feeling kind of protective. This is a summary of what Dr. Michael Monroe told me over the phone tonight. You physician sorts, please feel free to correct and amend as necessary. The procedure: bilateral wrist reductions. The fracture in the left wrist is severe but will heal without too much difficulty. Four pins were placed and will come out in 6 weeks. The right wrist was, in surgeon parlance: “pretty bad.” I hate when they talk over my head. The arm had open lacerations where the break had poked through. They worked first to clean out the wound, and then set their attentions to bone. The radius was in too many bits to reassemble. They installed an external fixator—the purpose of which is to stretch out the ligament, maintaining the general architecture of how the pieces are supposed to fit. The anchoring structures are 2 pins in the radius, and another 2 pins in the metacarpal---the long bone right behind the index finger. The hope is that Bob will lay down enough bone to knit the areas together and fill in the gaps. Even if he heals well, he could easily develop arthritis there, and more procedures may be needed to help with that or to clean out further infection. We will be referred to a hand surgeon for any additional surgeries. Dr. Monroe said that future procedures can also depend on how well Bob recovers from his spinal cord injuries. If he regains partial use of his upper extremities, getting the wrists right would be of major importance. If he resolves to complete quad, then getting it “just right” wouldn’t be as crucial—no real cause to subject him to further surgical pain. They will check carefully for infection over the next couple of days. The usual procedure with extreme fractures is to splint in the ER, and then perform orthopedic surgery the same evening. Because Bob’s spinal difficulties were so overwhelming, the wrist surgeries were put off repeatedly. In fact, I signed a release slip for them to do the reductions on 10/31---surgery was cancelled because of the increased swelling in the cervical spine. Waiting so long increases the risk of infection. But the spine had to come first. As an aside, Dr. Monroe mentioned that the “external” part of external fixator is an important part of reducing infection risk: you want to put as little foreign matter into the wound as possible. When Bob came back up from surgery, his nurse Roxy didn’t hang his Diprivan (sedative) drip right away. She thought him adequately sedated from surgery, and was mindful of the eventual goal of getting him sitting up and off the vent. He was getting morphine for the pain, though. As the evening went on, Lynne and I watched Bob become increasingly agitated. I talked to him. I stroked his forehead. It helps some, but he’s really had just about all he can take. And yet the troubles keep on coming. We watched him cough repeatedly --this is silent but still quite noticeable in intubated patients. He was furrowing his brow and blinking his eyes rapidly. I ask him to give a hard blink if he is in pain, and he keeps his eyes open. I find Roxy and request that she start the Diprivan. He’s paralyzed. He’s pissed off. And he’s taking names. Yes, he’ll have to adjust to and deal with all those terrible feelings (and many more) in the coming months. But he doesn’t need to suffer tonight. She starts the drip. *** This afternoon around 1:30, I went outside the building to call my son Graham (9). It had been a few days since we last spoke, and I wanted to make plans with him to come to Las Vegas the weekend of the 15th. He has not seen his father since the injury, our two younger children weren’t allowed into Trauma ICU. Furthermore, he hasn’t seen Bob since 10/22, the day he drove to Las Vegas. Graham is tired of being brave, tired of being told what a good job he’s doing, tired of people asking how he is. What he really wants is to be here with us for a little while. He needs to see his Dad. We talked for a while and I reassured him I’d get flights in order. As I got on the elevator to return to SICU, my phone rang. It was Lynne. “Come back to the room,” she said. “Bob needs you.” During my absence, she stood near the head of Bob’s bed to keep an eye on him. He started to make noises with his tongue. She asked if he wanted some moisture. He blinked yes. She dipped an oral swab in a cup of ice water and applied a small amount to his lips. He then started to make a noise no one had heard before. He was trying to form a word. He repeatedly made the same series of sounds, each utterance painfully wrapped around the breathing and gastric tubes. He became more distressed. Lynne dialed my cell. I ran out of the elevator and down the hall to Bob’s room. I leaned in close and watched him struggle to talk. “Suh…tuh…ah…puh. Suh…tuh…ah…puh.” “Stop?” I asked. “Stop what?” “Suh…tuh…ah…puh…di….s.” “Stop this? Did it bother you that Lynne was giving you water?” A tiny shake “no.” Even with the halo brace, he can manage slight movement. “Do you want us to stop talking?” Another “no.” “Suh…tuh…ah…pus…di…s. Di….s.” Stop this. I asked if he meant the injuries, the pain, the surgeries, the hardware, the vent tube, the IVs, the catheters… He nodded “yes.” *** I am not tired of being brave. I am not tired of being told what a good job I’m doing. I am not tired of being asked how I am. I have not cried much about this. It comes in small rivers, only when the conditions of fatigue and privacy are perfectly met. This morning was one of those times, and I now know that catharsis has its price. I was getting ready to come to the hospital when the torrent hit. My sadness broke in waves, again and again. My vision became blurry. I didn’t think much of it. It was only after I dried my tears that I noticed I couldn’t read the clock radio. I ran to the mirror to check: my contact lens was no longer in my eye. I searched the counters. I looked in the sink and in the folds of my clothes. Lynne came in and crawled around on her knees, sifting gingerly through the shag carpet. Gone. I wear a single gas permeable hard contact lens in my left eye. I do not use my eyes in stereo (untreated strabismus/amblyopia as a child) so I only need correction on my dominant side. I have had this lens for over 5 years and it was probably time to upgrade my prescription anyway. But not here. Not now. I go to the hospital in glasses. This drives me CRAZY. I am extremely claustrophobic and hate anything on my face. Besides, my frames look dorky with my dreads. By late afternoon, I can stand it no longer. I approach the nurses’ desk for ideas on local optometrists. Sharon, Bob’s respiratory therapist, recommends Nevada Optical, a few blocks west of the hospital. I call and they say to come right in. Bob is peaceful. I leave Lynne in charge, asking her to phone me if hell breaks loose. Parking spaces are hard to come by at the hospital. I run the 3 blocks to the eye doc. They see me right away. Dr. Grady J. Williams assesses my vision and take measurements for a replacement gas permeable hard lens. It is much more difficult than it should be to convince him that I need only one. He acquiesces. I am offered a soft contact lens to wear until the replacement hard one comes in. I have not worn soft lenses since the early 80s. They are huge! But I manage to get it in. I am $79 poorer for the exam and feel fortunate he threw in a few -2.75 soft lenses for free. He and his wife heard about my husband’s accident on the news; they will keep us in their prayers. I will pick up and pay for the replacement hard lens in a few days. *** Take care, everyone. Petition your favorite nonspecific diety for Bob. More news tomorrow. --Jacque From bobwatch@lists.ofb.net Thu Nov 7 15:35:06 2002 From: bobwatch@lists.ofb.net (bobwatch@lists.ofb.net) Date: Thu, 7 Nov 2002 10:35:06 EST Subject: [Bobwatch] The Bob Report 11/6 Message-ID: <19f.b53d7d2.2afbe22a@aol.com> --part1_19f.b53d7d2.2afbe22a_boundary Content-Type: text/plain; charset="US-ASCII" Content-Transfer-Encoding: 7bit Hello Jacque, Thanks again for the update. As I type this, I see my fingers move rather quickly and I am thinking of Bob's wrist surgery. It is amazing that how we sometimes take things for granted. It sounds like Bob is moving on the right track to recovery. We had Diwali Pooja (it is a very big festival celebrating the harvest and pray to to Maata (goddess)). I of course prayed for you and Bob and for him to have movement in hands and arms. I am sure he will have use of hands. Keeps positive thoughts. Yesterday evening, Simone was playing with Meera and Shiva and I was checking my email (mostly to see if you had emailed) on my laptop. Simone came up to me and said "Sunita, my Dad and Mom have the exact same thing, same color and looks the same". And I thought, how observant kids can be, sometimes you don't think they notice any thing; then they amaze you. Simone looks like loves her school. She was telling me about it and how much fun she had. They baked a pie. She was wondering when do they get to eat it. I think it is great idea for Graham to come and visit, I can imagine his frustration. I do not know what your plans are, but if you want some one to fly with him, let me know. I can fly with him on a weenend Ted is not on call. Ted has been explaining everything to me after I read your emails. According to him, it sounds like Bob is doing well. I know tell that to Bob and watch his expression. He will probably laugh at it. I am sure you know, we are thinking of you and praying for Bob to stablize and to talk to you guys and move. Let me tell you that those wheelchairs can move pretty fast. One of my very best friends is a quadaplegic. He was my housemate in Berkeley. It is time for the kids to get ready for school. I know I just mamble. By the way, your writing is excellent and very articulate. Sunita --part1_19f.b53d7d2.2afbe22a_boundary Content-Type: text/html; charset="US-ASCII" Content-Transfer-Encoding: 7bit Hello  Jacque,

Thanks again for the update.  As I type this, I see my fingers move rather quickly and I am thinking of Bob's wrist surgery.  It is amazing that how we sometimes take things for granted.  It sounds like Bob is moving on the right track to recovery.  We had Diwali Pooja (it is a very big festival celebrating the harvest and pray to to Maata (goddess)).  I of course prayed for you and Bob and for him to have movement in hands and arms.  I am sure he will have use of hands.  Keeps positive thoughts. 

Yesterday evening, Simone was playing with Meera and Shiva and I was checking my email (mostly to see if you had emailed) on my laptop.  Simone came up to me and said "Sunita, my Dad and Mom have the exact same thing, same color and looks the same".  And I thought, how observant kids can be, sometimes you don't think they notice any thing; then they amaze you. 

Simone looks like loves her school.  She was telling me about it and how much fun she had.  They baked a pie.  She was wondering when do they get to eat it.  I think it is great idea for Graham to come and visit, I can imagine his frustration.  I  do not know what your plans are, but if you want some one to fly with him, let me know.  I can fly with him on a weenend Ted is not on call.  Ted has been explaining everything to me after I read your emails.  According to him, it sounds like Bob is doing well.  I know tell that to Bob and watch his expression.  He will probably laugh at it. 

I am sure you know, we are thinking of you and praying for Bob to stablize and to talk to you guys and move.  Let me tell you that those wheelchairs can move pretty fast.  One of my very best friends is a quadaplegic.  He was my housemate in Berkeley.

It is time for the kids to get ready for school.  I know I just mamble.

By the way, your writing is excellent and very articulate.

Sunita --part1_19f.b53d7d2.2afbe22a_boundary-- From anderwiz@yahoo.com Fri Nov 8 03:46:28 2002 From: anderwiz@yahoo.com (Douglas Wisdorf) Date: Thu, 7 Nov 2002 19:46:28 -0800 (PST) Subject: [Bobwatch] Hello from an old friend. Message-ID: <20021108034628.58991.qmail@web13007.mail.yahoo.com> --0-1339622882-1036727188=:58510 Content-Type: text/plain; charset=us-ascii Dear Jacque, Amy Ragen told me of Bob's accident, and has forwarded your emails to me. I can't tell you how sorry we are for what you all are going through. Doug, Conner and I are thinking of you often and saying prayers for improvement in Bob's condition. It's been so long since I've talked to you...I hate to admit I didn't even know you moved to California. I have a sister who lives in Las Vegas named Jeanette. I've told her about your family and she wants to know if there is anything she can do for you. She's new-ish to the area, but might have some connections to make things a little easier for you. Let me know if we can help in any way. Stay strong. Love, Melody, Doug & Conner Wisdorf anderwiz@yahoo.com 206-322-1007 Please tell Graham that Conner says Hi. --------------------------------- Do you Yahoo!? U2 on LAUNCH - Exclusive medley & videos from Greatest Hits CD --0-1339622882-1036727188=:58510 Content-Type: text/html; charset=us-ascii

Dear Jacque,

Amy Ragen told me of Bob's accident, and has forwarded your emails to me.  I can't tell you how sorry we are for what you all are going through.

Doug, Conner and I are thinking of you often and saying prayers for improvement in Bob's condition. It's been so long since I've talked to you...I hate to admit I didn't even know you moved to California.

I have a sister who lives in Las Vegas named Jeanette.  I've told her about your family and she wants to know if there is anything she can do for you.  She's new-ish to the area, but might have some connections to make things a little easier for you. 

Let me know if we can help in any way.  Stay strong.

Love, Melody, Doug & Conner Wisdorf

anderwiz@yahoo.com

206-322-1007

Please tell Graham that Conner says Hi.

 

 

 


Do you Yahoo!?
U2 on LAUNCH - Exclusive medley & videos from Greatest Hits CD --0-1339622882-1036727188=:58510-- From jacque@oz.net Fri Nov 8 09:57:48 2002 From: jacque@oz.net (jacque@oz.net) Date: Fri, 8 Nov 2002 02:57:48 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/7 Message-ID: <3530.166.128.54.100.1036749468.squirrel@www.oz.net> Today I transferred my non-hospital life to new housing. John R. has arranged for a 2-bedroom long term rental 3.5 miles north of UMC. I got up early this morning to pack my suitcase and the cooler. John and I left to run a few errands; Lynne came to the hospital to take care of Bob until we got back at 1p. Bob’s ventilator was changed during the time Lynne was with him. This one is used to wean—it does not automatically breathe for him, but rather supplements the breaths he initiates on his own. I hope he can be extubated soon. We need to hear from the boy. The nurses say his sedation medication is at the same dose as yesterday. Why is he so sleepy? He has been running a fever for most of the evening. Not surprising in light of two surgeries in two days. A lot of inflammation. 38.8C which is almost 102F. They are giving him Tylenol to douse the fire. The nurse measures it out in a big turkey baster and puts it in the same tube as his Probalance. Lynne left for the airport at 3:15. It was such a comfort to have her here. John drove her to McCarran so I wouldn’t have to leave Bob. He then stayed near the airport to pick up my sister Lisa and Carly at 6p. What a guy. This afternoon, I engaged myself in a marathon reading session of BL’s medical chart. Man oh man. He’s a wreck. Let this be a lesson to all of you--stay the hell out of Nevada. T4 burst fx, T5 fx, non-displaced T3 fx, bilateral T1 lamina fx; T4 paralysis—S/P orif T1-7 with instrumentation and left ICBG 10/28/02 C3-4 facet fx, C3 endplate and pedicle fx, and C7 displaced spinous process fx—S/P ACDF C3-4 and application of halo 11/5/02 Bilateral comminuted radial fxs—S/P application of x-fix right radius and ulna, percutaneous pinning of left wrist 11/6/02 Right 1st & 3rd rib fx, bilateral pneumothorax Got all that? I do find myself having a strange affection for Las Vegas. Nevertheless, I doubt we’ll ever come back. I had not spent much time in this city before Bob’s accident. Looks like I’ll never have the thrill of $2.95 steak and eggs. The lights and activity help me not to feel so lonely driving home from the hospital at 2 am. Half the world is still awake and behaving stupidly. Or so it seems. Earlier this evening, Bob was sleeping, an opportune time to settle into the new digs and have dinner. John, Lisa, Carly and I ate at a great Peruvian restaurant called Inka. The cafeteria food at UMC is better than most, but a change of venue was needed after 12 days. Dr. Vater came in at 11p to check Bob. He got the stats from the nurse, and then raised the head of Bob’s bed to 30 degrees. This will certainly improve the view once he opens his eyes. I’m tired. Good night. More tomorrow. Jacque From Court3751@aol.com Fri Nov 8 23:54:31 2002 From: Court3751@aol.com (Court3751@aol.com) Date: Fri, 8 Nov 2002 18:54:31 EST Subject: [Bobwatch] (no subject) Message-ID: <11a.19d1c594.2afda8b7@aol.com> --part1_11a.19d1c594.2afda8b7_boundary Content-Type: text/plain; charset="US-ASCII" Content-Transfer-Encoding: 7bit Jacque, Just a quick note to let you know how sorry we are to hear about Bob's accident. Thank you for keeping us informed with the e-mails. Boy you sure could use a guardian angel now. (I am sending you one through my thoughts.) Take care of yourself the last thing you need is to become ill yourself. Our prayers and thoughts are with you and your family. We will keep PRAYING! Mike and Amy Courtney --part1_11a.19d1c594.2afda8b7_boundary Content-Type: text/html; charset="US-ASCII" Content-Transfer-Encoding: 7bit Jacque,

Just a quick note to let you know how sorry we are to hear about Bob's accident.
Thank you for keeping us informed with the e-mails.  Boy you sure could use a guardian angel now.  (I am sending you one through my thoughts.)  Take care of yourself the last thing you need is to become ill yourself.  Our prayers and thoughts are with you and your family.

We will keep PRAYING!

Mike and Amy Courtney --part1_11a.19d1c594.2afda8b7_boundary-- From jacque@oz.net Sat Nov 9 08:50:22 2002 From: jacque@oz.net (jacque@oz.net) Date: Sat, 9 Nov 2002 01:50:22 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/8 Message-ID: <3022.63.178.205.220.1036831822.squirrel@www.oz.net> This morning, my sister Lisa did the first shift in Bob’s room. Carly rested and read magazines. John R. and I got my apartment-based computer arrangement up to snuff. Our main goal was getting a printer set up. I have not yet looked at any sites that touch on our situation; as Bob’s immediate traumas ease up, I'll have more time to focus and prepare for our future. Friends are sending links, and I want to print some things out. I’m grateful he helped me with that. Lisa reports that Bob had two sets of visitors this morning: several doctors from Infectious Diseases and a physical therapist. The Infectious Diseases guys checked out the blood work associated with Bob’s current fever. Lisa thought their visit to be a teaching session; my husband as Figure A. Results of a few cultures are still outstanding---but white blood cell count is dropping, a good sign. His temperature is a bit lower this night than last. They have discontinued his sedation and he spends more and more of his time awake. I talk with him whenever he opens his eyes. Surely cruel and unusual behavior toward a man who has no way to stick his fingers in his ears. Lisa asked Bob if he was bored. A nod “yes.” They are very close to pulling the breathing tube, but won’t commit yet. Bob is no longer connected to the ventilator; he still has the tube, though, and is receiving 40% humidified oxygen through a T-piece. I can hardly wait for extubation. I miss him so much. The physical therapist came in to exercise Bob’s legs. I am to call her Sunday morning when I come to the hospital---she will return and demonstrate the moves to me. I'll need to learn the best way to keep his limbs flexible--I will certainly undergo some training during the coming weeks as we start the rehabilitation process of his recovery. After Lisa and I did the shift change this afternoon, she, Carly & John headed out for a little Vegas style action. They got caught in a tremendous traffic jam on the Strip, and visited New York New York for lunch at Il Fornaio. Lisa stopped in Palo Alto before coming to Vegas. She went through my photo albums for a few more family pictures. I now have the bulletin board in BL's hospital room completely covered. He cannot turn his head to see them; the halo prevents that. I love looking at them, though. I miss my kids and am very happy to see Carly this weekend and Graham the next. Lisa told a story of Simone (3 ½) describing her new preschool experience. “We make pumpkin pie,” she said, “and we read stories and I play with kids and have fun and the toys don’t suck.” @#!$!@?????? Now, see why I didn’t want her to go to preschool? She can pick up that kind of language at home---from her siblings -- for free. But seriously, folks… I am happy she has a loving place to spend a few hours. Simone is still young enough to require constant adult input. She has bonded well with Julie, instinctively adapting to best ensure her survival. She will talk with me for a bit on the phone, but seems distracted and runs off suddenly. Will she forget me? Prior to this, I had never been apart from her for more than two days. She tells people at the park, “My Daddy fell in a hole in Las Vegas and got hurt.” My new apartment is quite comfortable but smells of cigarettes. I'll get over it. The vinyl shower curtain is peach and vociferously noxious. We’ll go to Target for socks tomorrow, and pick up a fabric curtain, too. The window of Bob’s room faces the Trauma Center parking garage. On the top is the helipad where the Mercy Air choppers land. This is how my husband was brought here 10/27. The noise of approaching helicopters is quite compelling, and I must run and look every time one comes in. I cannot see them unload—the lip on the top of the garage provides privacy—but each time one arrives I can’t help but think of the siege of grief and shock that awaits the traumatically injured person. And their family. And everyone who knows and cares about them. I have received many wonderful cards, letters and care packages in the mail. I am floored by the kindnesses extended in our direction. I hope you all know how much your support means to me. Thank you for sticking with us— Jacque From lynnetrainor@yahoo.com Sat Nov 9 23:13:52 2002 From: lynnetrainor@yahoo.com (Lynne Trainor) Date: Sat, 9 Nov 2002 15:13:52 -0800 (PST) Subject: [Bobwatch] The Bobwatch Fund Message-ID: <20021109231352.2665.qmail@web14106.mail.yahoo.com> Hello Bobwatch Subscribers: A fund has been created to benefit the (Deerr-) Lord Family. I am awaiting advisement from my CPA to see if your donations can be tax deductible as it may be possible to set up the fund as a non-profit benefit fund. I will forward information as I receive it. Donations can be sent to: Exchange Bank 136 Calistoga Road Santa Rosa, CA 95409 707.539.1505 Please make checks payable to The Bobwatch Fund, and refer to the account number 0095024931. Let's help to ensure that Bob's family has all that they need. Thank you for your kind consideration. Please contact me with any questions or suggestions at lynnetrainor@yahoo.com or 707.537.1232. Regards, Lynne Trainor __________________________________________________ Do you Yahoo!? U2 on LAUNCH - Exclusive greatest hits videos http://launch.yahoo.com/u2 From jacque@oz.net Sun Nov 10 15:53:59 2002 From: jacque@oz.net (jacque@oz.net) Date: Sun, 10 Nov 2002 08:53:59 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/9 Message-ID: <3436.63.178.207.33.1036943639.squirrel@www.oz.net> Don drove in from San Jose late Friday night and went straight to the hospital. I slept in because I knew he’d do the morning shift. He calls my cell at 10:30a, they need to suction Bob’s lungs, he says, but Bob won’t let them. They want to extubate today, but not if his numbers don’t improve. I ask Don to put the cell phone up to Bob’s ear and I say BL I know you can’t talk but you can listen so please let the nurses do their job so you can get better. Please. Please. I love you and need for you to come home. Please BL. Please. Now nod so Don knows to take the phone back. And he does and I tell Don that I’ll be there as soon as I can. When I get off the elevator I find Don in the waiting room. “Did the nurses kick you out?” I ask. No, he says, it was Bob, I asked if he wanted me to get out of his face and he nodded yes. So we make conversation before I go into Bob’s room. How was your drive from San Jose, how soon after work did you leave? And he’s struggling to come up credible timeline so I won’t be pissed at how fast he drove but he really shouldn’t bother because although I love my bro’ I don’t have a lot of concern left over for other people. I go into Bob’s room and kiss him on the forehead. The oxygen saturation numbers are in the mid-90s. I hear you kicked Don out, I say, are you going to tell me to get lost, too? He nods “yes.” Well, I’m not going anywhere, I declare, shaken, but I grab a magazine from my tote bag. Do you want me to read to you? He nods “yes.” So I page through recent issues of Time and Newsweek looking for business articles, technology write-ups, pop culture pieces. I read a review of David Rockefeller’s new memoir. Should I keep reading? He nods “yes.” Then a piece about Toyota’s Scion line and Honda’s new cars aimed at Gen Y. Keep reading? Yes. A Joel Stein humor column about the Museum of Sex in New York City. Keep reading? Yes. And the whole time I’m reading the O2 sat numbers keep dropping, and the apnea alarm keeps sounding, the high blood pressure bell keeps dinging, the monitor is beeping at me because his heart rate is skyrocketing. Still keep reading? I ask over the din and he nods “yes.” And the nurses keep coming in and trying to suction but no matter how much I plead he bites down and won’t let them get the tube in. The nurse gives him some morphine and he settles a bit. His eyes close. I’m going to run down and get something to drink, I tell him. I’ll be right back. When I return, Bob has an oxygen mask over his face and the respiratory guy is bagging him. What’s going on? He says Bob needs to go back onto the vent and that they need to pull out the old tracheal tube and put in a few one and I ask why a new one is needed and he rolls his eyes and says condescendingly: “Well, if you’ll stop interrupting me, I’ll finish my explanation.” Snap. So I start yelling at him, I’ll get my fucking explanation from someone else, get your no-bedside-manner sorry ass out of my husband’s room. I stride out to the nurses desk and demand at no one in particular that I want another respiratory guy right away, not this waste-of-skin-and-chemicals jerk who just an hour earlier complained about having to walk to the next building to get the sterilized water for the T-tube setup, barking at the nurse to tell his supervisor that after this he was going to the ER because he herniated a disc lifting the case of water from its storage closet. And at the time I let all that stuff go because I’d already played the “discipline the healthcare worker who bitches about their back pain in front of my spinal cord injury husband” card. No one seems to be paying any attention to me and I walk up to a nurse doing paperwork, get someone else from respiratory, I say, I don’t want that guy anywhere near my husband and she says no one else can step in because they’re in the middle of a procedure but she gets on the phone anyway. Then she walks into Bob’s now close-curtained room and the guy yells I don’t have time for any reprimand from my supervisor I’m trying to save this man’s life even if his goddamn wife doesn’t want me to. And the anesthesiologist comes running in from the elevator and a new respiratory guy slides through the pulled curtain and Mr. Ass Boil comes fuming out and stomps by me on his way out of SICU. My cell phone has been ringing but of course I can’t answer it now. The curtain stays closed for a long time. I’ve already caused enough mayhem. I exit the hospital and take a walk around the perimeter. Two messages from Lisa. 1. Does Carly have my permission to see Igby Goes Down? 2. Igby has left town can they go Bowling for Columbine? I appreciate them checking in with me, but I’m not fit to be anyone’s parent right now. I wait a bit before calling back. After 20 minutes, I re-enter the building. Vater passes me in the long hall between Trauma and SICU. “How’s it going?” he asks, conversationally. “Not too good,” I say, but I am crying and in no mood to converse between sobs. I wave him off and he continues toward Trauma. I get in the elevator. I return to find Bob back on the ventilator. They had to extubate and reintubate because he bit the cuff inflation pigtail off the old tracheal tube. He is mildly sedated but his eyes are wide open, blinking, staring straight ahead. He won’t look at me or acknowledge my presence so I walk away from the bed. I sit in the corner chair in the room, crying as quietly as I can, grabbing tissues from the little box with “Lord” written on it in black marker, and the nurse rubs my shoulders and offers me coffee or water but I’m all set on fluids thank you very much. She continues to clean up the equipment and packaging from the intubation. She stops by my side and kneels down whispering, I gave him some Haldol to settle him right before they had to put in the new tube. I think he can fall asleep if it’s quiet so don’t let him hear you crying. But Bob does not sleep; he continues to stare straight ahead. I move to the wall desk on his right side and set up my laptop. I watch the monitor. When his heart rate elevates, I figure he’s more alert and wants to talk. But he does not/cannot let me know he hears me. I go back to the desk. Vater comes in and apologizes for not stopping to chat---he had to get to Trauma. He has looked at the chart and knows what went down. Returning to the vent is not uncommon in this situation, he says; don’t let it alarm you too much. But this entire chain of events is pretty uncommon to me and I say as much. More time passes. The new respiratory therapist comes in periodically to write numbers on a clip board. Ass Wipe pokes his head through the door and says hey Steve since you took one of my patients I’ll take one of yours. Steve says no problem that’s ok and Ass Wipe skids off down the hall. I watch the heart monitor. I talk with Bob. No response. I work on the computer. I repeat this cycle for a few hours. I shouldn’t say it, but I can’t help myself. I lean over and stare into his blue eyes. I love you and want you back, I say, I would do anything to make this all go away. But I can’t so we have to dig our way out as best we can. I’ll stay here and take care of you for as long as it takes. And then we’ll go home and I’ll take care of you for as long as it takes. But if you won’t let people help you, should I fly home and start planning a funeral? From Reid Kneeland" This is a multi-part message in MIME format. ------=_NextPart_000_003D_01C288DE.12F5A180 Content-Type: text/plain; charset="Windows-1252" Content-Transfer-Encoding: quoted-printable Dear Bobwatch list, For those of you wanting to visit L.V. and stay close to the hospital, I = just got news of a terrific room deal from my own mother. Mom is a = Vegas fanatic, and is on the e-mail list for deals at Palace Station. = Believe it or not, this is the only place she ever stays when she comes = in for her thrice yearly bingo/slot machine fix: The Casino host's name is: Janet Anderson and the 800 # is: = 800.544.2411, However, I received a mailing from Palace Station that = Tower rooms were to be had for as low as $9.00! Their online address = is: www.stationcasinos.com. I would call her as well as check online = to see which is best. Reservations # is: 888.767.7772. =20 When you have your arrival and departure dates, please let me know. = I've put together a travel grid for Jacque, which is helping her keep = track of all the many comings and going. Keep praying, Ellen F. ------=_NextPart_000_003D_01C288DE.12F5A180 Content-Type: text/html; charset="Windows-1252" Content-Transfer-Encoding: quoted-printable
Dear Bobwatch list,
 
For those of you wanting to visit L.V. = and stay=20 close to the hospital, I just got news of a terrific room deal from my = own=20 mother.  Mom is a Vegas fanatic, and is on the e-mail list for = deals=20 at Palace Station.  Believe it or not, this is the only place she = ever=20 stays when she comes in for her thrice yearly bingo/slot machine=20 fix:
 
The Casino host's name is:  Janet = Anderson and the=20 800 # is:  800.544.2411,  However, I received a mailing from = Palace=20 Station that Tower rooms were to be had for as low as $9.00!  Their = online=20 address is:  www.stationcasinos.com.  I would call her as well as check online to see = which is=20 best.  Reservations # is:  888.767.7772. 
 
When you have your arrival and departure = dates, please let me=20 know.  I've put together a travel grid for Jacque, which is helping = her=20 keep track of all the many comings and going.
 
Keep praying,
 
Ellen F.
 
 
------=_NextPart_000_003D_01C288DE.12F5A180-- From jacque@oz.net Mon Nov 11 16:44:50 2002 From: jacque@oz.net (jacque@oz.net) Date: Mon, 11 Nov 2002 09:44:50 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/10 Message-ID: <3091.158.252.200.206.1037033090.squirrel@www.oz.net> Bob is now encountering some of the secondary problems associated with his injuries and long hospitalization. What first just starts as broken bones ends up in quadriplegia, lung problems, heart problems, blood poisoning... I will hang in there because there are few other choices. I am feverishly hoping that Bob will do the same. Nurses say Bob is not sedated. But he is, for the most part, non-responsive. Early Sunday morning, his temperature rose to 39.4C. He is being dosed with Tylenol and covered with a Meditherm (cooling) blanket. A cardiologist came to evaluate Bob’s sinus tachycardia (elevated heart rate). Several EKG strips were run and he was given three doses of Digoxin to slow it down. He is still being treated with Dexamethasone (steroid) for the spinal cord swelling. He also gets Reglan to help him tolerate the tube feeding. The doctors from Infectious Diseases report that Bob has developed septicemia (blood staph infection). Yesterday, the nurses took blood samples from his arterial line and sent them off in little tabasco-shaped bottles with labels like "BD Bactec Lytic/10 Anaerobic/F" and BD Bactec Plus + Aerobic/F". He is being treated with two IV antibiotics: Gentamycin and Vancomycin. My sister Lisa was there yesterday morning when Dr. Patel, the physician overseeing all Bob's care, came to call. Outside the room, out of Bob’s earshot, she questioned him about the obstacles to come. She asked about Bob's non-cooperation Saturday, was this response standard for injuries of his type? Patel said that rage is a common reaction. They will continue to aggressively treat Bob's health problems, but if he continues to refuse certain procedures, they will bring in a psych consult in a few days. If Bob is found to be mentally competent, they cannot force treatment if he refuses. This terrifies me. So I hope and I plead. I talk to him and tell him how much I love him and miss him. I read Wired Magazine aloud to him. I am working hard to be patient, to trust that that the doctors are doing their best, to have faith that he will come out of this OK. But some small portion of me is considering the fact that I may emerge from this a widow. Most of the doctor visits happen in the early morning hours, prior to 10a when I am allowed to begin my daily visit. I am not routinely told of their analyses (or even the fact that they came) unless I track them down and ask. It is only in reading Bob’s chart that I discover many things. “Digoxin?” I’ll ask the nurse in alarm. “Is something wrong with his heart?” I am coming to accept that this is the way hospitals have been run for years and my small protestations are not going to change anything. Still… Here’s to a better day today. Carly and Lisa fly home this morning, Tom M. and Kelvin G. arrive. Thank you all for the concern that you send in our direction. I hope to have more upbeat news for you tomorrow. Take care— Jacque From jacque@oz.net Tue Nov 12 17:58:18 2002 From: jacque@oz.net (jacque@oz.net) Date: Tue, 12 Nov 2002 10:58:18 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/11 Message-ID: <3039.206.133.195.236.1037123898.squirrel@www.oz.net> I am pleased to report that yesterday produced no stunning new changes in Bob’s condition. Nice to have a breather. The past few days have been rough. From what I can tell, we’re holding steady. And maybe even getting some good news. In a shocking development, several of Bob’s specialty physicians came through the room during non-vampire hours. I was able to nag small tidbits of information from each. 10:00 a The pulmonologist arrives to review Bob’s chart. He then enters the room and checks the ventilator settings. Not a word or glance in my direction, two feet from where he’s working. “I’m Jacque, Bob’s wife,” I say archly. And YOU are…?” He introduces himself as Dr. Stewart. He listens to Bob’s chest in several places with a stethoscope. “He sounds better today than yesterday.” And he’s off. Bob is alert for most of the morning. His eyes are wide open, and seem to better connect. His heart rate lowers when I speak to him, and jumps back up when I walk away. So I just keep talking. About my trip to the airport that morning to take Lisa and Carly to their flight. About his new neighbor in SICU4. About plans for Graham to fly in this weekend. About the increased numbers of nursing staff at the desk outside his room and how some people just shouldn’t wear white. Jacque Deerr-Lord: using inanities and gossip to battle tachycardia since….since…well, early November, at least. Tom M. and Kelvin G. arrive from the airport close 11:30. Bob is entering a sleepy phase, but still knows they’re there. Once he dozes off completely, I drag Tom and Kelvin with me to the cafeteria. Bob is more alert when we return from lunch. We visit for a while, and then step out for fresh air. They both ask what they can do to help me. Thankfully, for now, I am all taken care of. I encourage then to get out and see some sights. They leave. I walk the few blocks to my mailbox. No deliveries on Veteran’s Day. Duh. 2:00p I arrive back in SICU to find Bob with a wet washcloth over his mouth. His nurse Susan comes into the room. She asks if it is OK to shave Bob’s (emergent) moustache. She was softening it up-- but didn’t want to do it without my permission. Is there some medical reason for this, I asked. Is it getting in the way? Not really, she tells me, some patients are just more comfortable. She comments that in all the family pictures Bob is clean shaven. Even so, I figure we should defer to Bob on this one. “BL, your nurse is offering to shave your upper lip. Give me a hard blink if you want her to do that.” No blink. “OK, now give me a hard blink if you DON’T want her to shave you.” Hard blink. Whew. Glad we asked. 2:45p Two impossibly young physical therapists wheel in the biggest, ugliest pink Naugahyde ™ chair. Think beauty parlor without the bonnet hairdryer. Today is the day, they announce: Bob gets to sit up! The chair is straight-backed and padded, with straps at the chest and waist. This is progress in the right direction, I know-- still not sure I’m ready to see my husband’s inert lower half dragged out of bed. Before I have a chance to reflect on this, however… 2:46p A cardiac technician arrives to do an echo of Bob’s heart. She wins. PT leaves. They say they will come back later-- but this does not happen. She describes the test as a videotaped ultrasound examination of the function of Bob’s heart. The nurse helps her unfasten the vest straps on Bob’s halo brace, and then asks me to leave the room. Later the technician tells me that I really didn’t have to go. 3:40p Dr. Palitang of Infectious Diseases shows up with a resident: BL as “teachable moment” yet again. He gives me no new information about the levels of staph in Bob’s blood, but does assure me that the two antibiotics are the proper treatment for now. 3:50p Dr. Wesley, the cardiologist, tells me that a preliminary reading of Bob’s echo shows no obvious abnormalities. He describes Bob’s symptoms as a true sinus tachycardia, no signs of pathological arrhythmia. He will examine the test more thoroughly, but at this point has no reason to believe that Bob’s rapid heart rate is anything more than a reaction to the stress of his injuries. 5:15p The nurse announces Bob’s last injection of Decadron (steroid). From now on he will get that medicine in crushed pill form. Dr. Vater authorizes the change; Bob is tolerating tube feeding well AND that the pills are much less expensive. 6:00p Tom and Kelvin arrive to take me out to dinner. After getting recommendations from Martin, we head west on Sahara. We settled on a very nice Japanese place. I eat tempura and ebi sushi. Tom and Kelvin eat fire roll and Japanese chicken soup. There is warm sake and beer. We take turns telling our “Bob” stories. It is so good to laugh. From jacque@oz.net Wed Nov 13 18:04:57 2002 From: jacque@oz.net (jacque@oz.net) Date: Wed, 13 Nov 2002 11:04:57 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/12 Message-ID: <3230.158.252.200.179.1037210697.squirrel@www.oz.net> I call my son Graham (9) in the morning before he leaves for school. He bursts into tears upon hearing my voice. It has been entirely too long since he¡¦s seen his Dad (10/22) or me (10/30). He arrives this coming Friday night, traveling with Bob¡¦s brother Don. Originally, Graham was to return to school on Monday but a bit more time with his folks is all he wants. I speak with the principal at his school who will contact the 4th grade teacher for packets of work Graham can bring with him. Our current plan has him being with me here until 11/27. We will drive back together to Palo Alto for the Thanksgiving weekend. I will return to LV alone December 2. I arrive at UMC at 10:15a¡K.not a single space in any of the lots. Nothing in the parking garage, either. I find a 10 hour metered space on the street. My 24 quarters (love those empty film cans) buy me 6 hours. I hope I remember to move my car before 4:15. *** I get up to SICU and greet Bob. He opens his eyes, but immediately closes them again. I grab the chart. He¡¦s had a few visitors in the time before my arrival. Ah, the beauty of access to medical records. Because if I didn¡¦t read it myself, I wouldn¡¦t know. They¡¦re not big on sharing these kinds of things. My college job in Surgical Pathology at Stanford has given me some comfort with medical terminology. Still, the journey through the land of MediSpeak is fraught with peril. Come along with me and we¡¦ll learn together. (All you medical sorts, chime in and clarify/correct when necessary.) 1. 8:45 a Physical Therapy Bilateral ankles positioned in neutral. HOB increased to 30 degrees , O2 sats decrease to 79% HOB decreased to 25 degrees, O2 at 85% HOB decreased to 15 degrees, O2 at 93% Did not tolerate increased upright activity, SCDs on throughout HR 79-105, BP 130s/70s.Cont per P/T plan. ¡§Straighten up those feet, mister. But, dang! The more we tilt up the bed, the less he breathes.¡¨ 2. 9:20a Dr. Shah (opthalmological consult) PION vs. Left occipital infarct Will not be able to determine visual characteristics until alert, extubated and able to respond. (They¡¦re still worried about the right vision field deficit Bob complained about on 10/29.) From my own Internet research: Posterior ischemic optic neuropathy (from the University of Iowa opthalmological site): In this rare form of ischemic optic neuropathy, there is loss of vision but no visible abnormality in the eye, making it very difficult to diagnose. The posterior part of the optic nerve, located some distance behind the eyeball is affected by ischemia. Left occipital infarct: lack of blood supply to the left posterior part of the brain. Infarct n. localized necrosis resulting from obstruction of the blood supply Necrosis n. death of cells or tissues through injury or disease, especially in a localized area of the body. Ischemia n. a decrease in the blood supply caused by constriction or obstruction of the blood vessels.) ¡§The boy won¡¦t be seein¡¦ so good on the right side. Dunno why yet.¡¨ 10:00 a James C. Hayes Staph bactremia with fever ¡§Got a blood infection. He¡¦s burning up.¡¨ D/C R fem and R SC lines, Pt¡¦s leukocytosis resolves and fever improving. (Leukocytosis n. an abnormal elevation of white blood cell count.) ¡§Pull out all the needles on the right side once he perks up and cools off.¡¨ CXR 11/11 0 focal airspace abnormality is present. „³ OK, I have to stop right here. This is a place where I get really scared because it was written in the chart like this: 0 focal airspace abnormality is present ¡§Oh no! His chest xray shows no focal airspace! And abnormality is present!¡¨ when it really should be 0 focal airspace abnormality is present ¡§Yipee! His chest xray shows no focal airspace abnormalities!¡¨ Puncuation. Is. Everything. *** I¡¦ve received many emails starting with ¡§Jacque, I¡¦ve never met you or Bob but I was pointed to Bobwatch by¡K¡¨ BBA (before Bob¡¦s accident), I maintained a personal website for several years: http://www.deerr-lord.com I haven¡¦t updated it since he fell. But if you want to check it out, you will find many Bob pictures (and the rest of the family) in the Photo Album section. *** Said goodbye to Kelvin and Tom today. Before they went to the airport, we added additional decoration to BL¡¦s SICU room. Tom stood on a chair to hang a mobile, a beautiful wire creation made by Mike R. for Bob. Kelvin put up a large poster of our family he¡¦d had made from a snapshot. *** Occupational Therapy Linda from OT arrives around 3:30p. Bears an uncanny resemblance to Dr. Laura Schlessinger. She seem to disapprove that Bob and I have not adopted her preferred convention of ¡§yes/no¡¨ for voiceless patients. I might just be projecting here. Look up for yes. Look down for no. Uh¡Kyeah, I guess. I¡¦m supposed to have known this exactly¡K..how? First time I¡¦ve seen this woman. So she works on Bob¡¦s arms. She straightens and bends each finger one by one. She lifts each heavily casted forearm and rotates the elbow through a complete range of motion. She then supports his entire arm and makes movements through the shoulder joints on both sides. I watch, knowing I¡¦ll have to learn to do this. But she managed to piss me off from the get-go and I¡¦m not all that interested in her input anymore. Her chart notes of the encounter: Pt. on contact precaution, cooling blanket for temp. Cont. on vent. Wife present at bedside. Pt. took coaxing to interact. Pt. appears to have some right shoulder extensors active, will cont. to follow. ¡§Active right shoulder extensors???? YEAH!¡¨ From jacque@oz.net Fri Nov 15 00:06:16 2002 From: jacque@oz.net (jacque@oz.net) Date: Thu, 14 Nov 2002 17:06:16 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/13 Message-ID: <3218.168.191.209.26.1037318776.squirrel@www.oz.net> I call Dick (Bob’s father) first thing in the morning on his cell phone. He is back for another week’s stay. I wish him a “Happy Birthday.” (It is his 60th.) There isn't much to be happy about. So we settle on the factual “Birthday” as the proper acknowledgment. “Birthday, Dick.” “Thank you very much.” As is our pattern, Dick takes the early shift. I arrive a bit before noon to find the head of Bob’s bed raised to 30 degrees. At that angle, it took a little while for Bob’s oxygen saturation numbers to come up to 100%. Dick reports he’s been holding steady for a while. It is good to see him propped up a bit. If you can ignore the halo, the pneumatic devices on his legs, the double casted arms and the breathing tube, he looks pretty much like a traditional hospital patient. *** Bob and I meet in the summer of 1984 as student engineering interns at Teradyne, an ATE (automatic test equipment) firm in Woodland Hills, CA. He is 18, and has just completed his freshman year at Caltech in Pasadena. He is much younger than their usual summer intern (“We never hire freshmen,” personnel tells him) but he interviews well. His prospective boss pushes it through. I ams 23 and have done my fair share of college hopping--Stanford, UC Berkeley, back to Stanford then off again. I am within two quarters of graduation from the University of Utah in Salt Lake City. I am somewhat older than their usual summer hire, but have also worked for them in the summer of 1982. My foot in the revolving door is my sister Lisa, a full-time engineer at Teradyne. Because of my advanced undergraduate status, I earn $4/hour more than Bob does that summer. It renders him apoplectic every time I mention it. :-) *** Mike Stein M.D. stops in for a quick visit. He is a UMC internist, not assigned to treat Bob, but rather a friend of Keith, a physician who was in the area when Bob got hurt. Mike has come by a few times, offering encouragement, answering questions, giving recommendations on local restaurants. He explains a few things I’ve written about from Bob’s chart. S/C does not mean “subcutaneous” as I guessed but rather “sub-clavian.” “No focal airspace abnormalities present” means no obvious consolidation (fluid filling) that would suggest bacterial pneumonia. Pneumothorax is a collection of air or gas in the chest or pleural space that causes all or part of the lung to collapse. It results from blunt or penetrating injury. *** I do not start my job at Teradyne until a few weeks into summer break. Bob starts a few weeks earlier. One evening Lisa comes home hopping mad. She vents to Charles: “Just who does that Bob Lord think he is?” She goes on to describe his offense: compiling his software interactively during business hours instead of putting it in batch mode. When she discovers this, Lisa comes stomping over to his desk and starts chewing him out for slowing everyone else down. Bob cuts her off: “Just doing what I was told to do. Take it to my boss.” Well. So Lisa is ranting and raving and complaining to Charles about this Bob Lord guy, this lowly summer intern, where does he get off being that rude to her, all the while relating not too flatteringly some of his more distinctive physical characteristics. (Among other things, something about knuckles dragging on the ground…) I begin my job a few days later. Based on her description alone, I pick him out right away. He’s young. And brash. Wickedly funny. WAY too skinny. But anyone who pisses off my bossy big sister is OK by me. I take a liking to him right away. *** I come home from being with BL. The apartment feels lonely so I switch on CNN. They announce unsubstantiated rumors that al-Qaeda’s next targets will be hospitals. Warnings have been issued to authorities in Houston, Chicago, San Francisco, and Washington. What? No Las Vegas? Why, it was the first city that came to mind when Ally Sheedy and Matthew Broderick were contemplating using nukes in “WarGames (1983).” Come to Vegas, Osama liebschen. I’ve got a Foley catheter with your name on it. *** The interns are all housed together in an open testing area dotted with desks. Every day, I arrive late and stay…well… not as late as I should. Bob reliably arrives at 8 and leaves at 5. He goes home to another full-time programming job, writing code for some econ professors at Caltech. I instantly find someone to date at work—five years older, not younger. Bob very occasionally admits to the unrequited love he suffers for a girl he knows at school. The interns go out to lunch every day, in gangs of 3 or 4. Numero Uno pizza, El Torito tacos, Chinese food. Any indoor air-conditioned place where we can escape the oven-like conditions of a San Fernando Valley summer. Bob comes to work each Monday morning, his face sunburned bright red. When pressed, he tells of his weekend trips to Newport Beach. Knowing he’s from Ohio, I offer a local’s advice. “There are closer beaches, you know.” But he insists Newport is his favorite. I then lecture him on the evils of sunbathing; he claims it helps his skin. Summer is over. The interns vow to keep in touch over the school year. Bob gives me his address at Caltech. I don’t know where I’ll be living yet in Utah. I promise to write him when I have a place. I return to Salt Lake City for my final two quarters of school. Bob begins his sophomore year at Caltech. I misplace his address in the move. I don’t write. *** Graham calls me at 9:30 in the evening. He is upset because he has to go to bed while Carly gets to stay up watching TV. Tell Carly she’s not allowed to watch TV after you and Simone have gone to bed, I tell him. That’s the rule. Carly doesn’t follow any of the rules anymore, Graham says. I tell Graham goodnight and ask him to hang up the phone. In ten minutes, I call and Carly answers. I ask why she’s breaking a family rule. We never had a rule like that she says, laughing, putting her hand over the phone, shut up, Graham, what are you talking about Mom? She then starts yelling and saying that I shouldn’t believe anything I hear from the house, everyone’s a pathological liar, shut up Graham, go to bed Graham… I hang up the phone. I call Lisa, asking her to call the house to see if she can get more information. Carly answers the phone and hangs up on Lisa. This morning I call American Airlines to buy another one-way ticket. Carly will be flying to Vegas with Graham and their Uncle Don this Friday night. I will drive with my two kids back to Palo Alto for Thanksgiving. So I know what we’ll do: we’ll homeschool. Hey, Graham and I did it for the first four months of his 3rd grade year, and we’re still speaking. I know, I’ll devise a unit study: Traumatic and post-surgical care of spinal cord injuries in Las Vegas. Grim, sure. But we gotta work with what we’ve got. More tomorrow--- Jacque From jacque@oz.net Fri Nov 15 19:39:06 2002 From: jacque@oz.net (jacque@oz.net) Date: Fri, 15 Nov 2002 12:39:06 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/14 Message-ID: <3136.168.191.208.50.1037389146.squirrel@www.oz.net> The saga continues... *** After graduation, I return to LA to live with my sister. A few weeks later, I go with Lisa and Charles to a Teradyne get-together. Over in the corner, Levis, zip-up blue sweatshirt (sleeves too short), brown hair in his eyes, cross-legged on the floor: Bob Lord. I am inexplicably glad to see him. I make my way across the room. He is engaged in animated discussion with some software manager guy I recognize but don’t know. I wait, not so patiently, for a break in the conversation. “Hey, Bob,” I say, “how have you been?” He looks up, surprised. “Jacque. Yeah, I heard you were back in town. Hey, how come you never wrote?” “Sorry,” I say, not sounding very sorry at all. “I lost your address.” “You threw my address away. Great.” *** I purchased Don and Graham’s tickets for tonight’s flight on Expedia. It hurts my brain too much to figure how I can add Carly to the mix. Expedia shows there are still seats on the plane, but if I buy Carly’s ticket separately, it looks like she’s traveling as an unaccompanied minor. Extra money. Extra hassle at both airports. This transaction needs a human touch. I call American Airlines and explain the situation. They do not gouge as profoundly as they could; San Jose to Las Vegas: $224 for the one-way ticket. *** The software manager gets up to work the room. I take his place on the floor next to Bob. How’s school going, where are you working, we should have lunch sometime, I’m staying at my sister’s, give me a call. Next day the phone rings. How about dinner next Friday night? “Dinner?” I tease. “I thought we said lunch.” (Pretty forward for a 19 year old, methinks.) “YOU said lunch,” he replies. “What’s wrong with dinner?” I know what’s wrong with “dinner.” Especially Friday dinner. Dinner is a date. Lunch is not. And there is no way in hell I’m going to date a teenager. He insists, and I don’t fight that hard. Oh well. It’s not a date. It’s just Bob Lord. It’s just a meal. *** I arrive at the hospital just as the sun is setting. This is the latest I’ve ever come. Dick, who has been there since 9a, fills me in on the events of Bob’s day. Breathing has been the biggest obstacle. The ventilator weaning process is down to two guaranteed breaths per minute---they are looking to Bob to provide the remainder on his own. He has been struggling all day. The ventilator alarm sounds on a regular basis. The apnea alarm on the overhead monitor weighs in nearly as often. The nurse wets a washcloth to wipe the sweat from Bob’s face. *** Five days later. Friday, April 19, 1985. As agreed, I pick him up outside of Teradyne. He comes out of the building and walks to the car, pale yellow Le Tigre shirt, 501s, white tennis shoes. Even from a distance, he looks absolutely gaunt. He gets in on the passenger side. “OK,” I say, “I swear, you’re even skinnier than when I saw you last week. So you’re, what, about six feet tall? 140 pounds?” “127,” he says, grinning. “But I’m usually 132. I just got over the stomach flu.” We go out for Chinese food. I’m thinking the evening is over, and then Bob suggests a movie: Stephen King’s Cat’s Eye. He knows a theater nearby and if we hurry we can still get tickets. Smooth. I have a really good time with him. He does complain a lot—nearly every situation we encounter provides a target for his wrath—but he’s tremendously entertaining. It’s easy to relax, because it’s not a date, just lunch with a former co-worker, time-shifted a few hours. I have no plans to get serious about anyone at this point. Especially not a 19 year old. *** Late nights in the apartment, I am wired and unable to sleep. In contrast, I am heavy-lidded and yawning in Bob’s ICU room. Put the blame on the steady inhale-exhale whoosh of the ventilator, filling the air with the sounds of gentle snoring. I leave the hospital around 10p, driving west on Charleston in search of retail. I discover a Wal-Mart on the left. Not just any Wal-Mart, but a 24-hour Supercenter Wal-Mart. The indoor dimensions are obscene, the lighting harsh. I select a queen-sized air bed and a purple crazy-quilt comforter. Back at the apartment, I pull the dresser out of the walk-in closet. I spread out the uninflated mattress and start the pump. In less than a minute, it expands to fill the entire space. Et voila. A third bedroom. *** “Wolfgang,” another former intern, calls and asks me to lunch. Cool. I go. A pattern develops. Lunch with Wolfgang. Dinner with Bob. Movie with Wolfgang. Trip to the beach with Bob. Rose Bowl swap meet with Wolfgang. Miniature golfing with Bob. Late-night drives on Mulholland with Wolfgang. Afternoon drives over Topanga Canyon with Bob. Wolfgang is closer to my age and already out of college. A more logical choice. Truth is I have a better time with Bob, enjoy his humor, can’t wait to see him. But the difference in our ages makes me uncomfortable; borrowing from a popular singer, I jokingly refer to him as my “boy toy.” I miss a lot of phone calls from Wolfgang because I am spending entire Saturdays with Bob. Then entire Sundays. My sister Lisa gets stuck taking messages, and I’m not so sure she likes where this is headed. She takes me aside. “Look,” she says, “You’re an adult. Your love life is your own business. Date whomever you want. Have a ball. I’ll just tell you one thing: I sure as hell don’t want to see Bob Lord coming out of my bathroom in the morning.” My relationship with Bob is nowhere near that stage. Next time I see him, I pass on her comment, laughing. “Tell her not to worry,” he says. “I’ll just piss out the window.” *** Jeanne, Bob’s mom, arrives today from Ohio. My older two children fly in from California tonight. It will be the first time Jeanne has seen Bob since the accident. It will be Graham’s first time seeing his Dad, too. I am unskilled in the etiquette of this situation. Do I walk her through the tubes, the casts, the bags, the pneumatics, the hardware, the vent…or do I leave the room so she can be alone with her son? Yes. I will stand back and let her be a mother to her child. Tonight I will go to the airport so I can resume being a mother to mine. *** Bob. Wolfgang. Bob. Wolfgang. Bob again. This goes on for a few weeks. I wonder if they know about each other and are messing with my head. I imagine them sitting over beers –not that Bob is old enough-- having a good laugh at my expense. Sure, I never mention one to the other, but I don’t think of it as devious. I’m just being polite. Do you brag to the spaghetti about the burger you had at lunch? But one night Wolfgang and I are at a restaurant. Our salads have just been delivered, and the conversation turns to the previous summer, when we all were interns. We talk about the different personalities, the fun we had, what people are up to now. He mentions Bob. “I worry about him,” Wolfie says. “Oh, why?” I ask, trying to sound neutral. “It’s just that he has so much acne. Poor guy. He’s never going to find anyone to love him.” Time freezes. Suddenly, clarity. I take a deep breath. “Guess what,” I say. “He just did.” From jacque@oz.net Sun Nov 17 09:12:20 2002 From: jacque@oz.net (jacque@oz.net) Date: Sun, 17 Nov 2002 02:12:20 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/15-11/17 Message-ID: <3185.158.252.200.230.1037524340.squirrel@www.oz.net> Bob is holding steady. I, however, am not. I will resume in a few days. From jacque@oz.net Mon Nov 18 09:14:00 2002 From: jacque@oz.net (jacque@oz.net) Date: Mon, 18 Nov 2002 02:14:00 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/18 Message-ID: <3101.206.133.210.103.1037610840.squirrel@www.oz.net> CXR 11/15 12:45 a Single film at 0325 hours is compared to yesterday’s examination and again shows post operative changes from multilevel upper thoracic spine surgery. Endotracheal tube and right subclavian central venous catheter noted. The heart size is normal. No vascular congestion. No definite active infiltrates, effusions or pneumothorax are seen in an examination compromised by exclusion of the tops of the lung apices. *** Charles and Lisa get hitched and fly off on their European honeymoon. Having completed the tricycle when I unpacked in March—time to get out of their hair. Bob, not surprisingly, is quite interested in me getting my own place. He offers to devote his weekends to the search. Guess he’s taken Lisa’s bathroom comment to heart. We focus on the South Bay---in particular, the coastal towns of Hermosa Beach, Manhattan Beach and Redondo Beach. My current City Hall job is only 25 miles northeast; a cakewalk by Southern California commute standards. Friday night. We buy the Sunday LA Times and hone in on beach community rentals. Bob plots our route—he shines at the traveling salesman problem. We’ll look through local papers once get to the South Bay. Saturday morning, to 7-11 for rations. Coke for BL, cola/cherry Slurpie for me. Portable fluids are a must for LA summer driving. I buy several Ice Cubes for bursts of fortification; when opened, they drip chocolate on the opened page of the Bob’s Thomas Guide. *** 11/13/02 Dr. Cooley #242 ø eval for recs on antidepressant 11/15/02 9:30 Psych---responding to physician order to eval. pt. However eval. not possible _____ _____ pt’s. current mental status. Call 389-7669 when _____ _____ C. Cooley MD *** Miles of unfurnished apartments. Rust-stained toilets. No toilet paper, though. Beginning to regret that big drink. Apartments that are too dark. Smell funny. Windows painted shut. No onsite parking. Obese mustache-lady landlords who want to save me a stamp by collecting the rent in person. Ugly, ugly shag carpet. *** Physicians Order Sheet 11/15/02 15:20 07:00A place pt. on T-tube 08:00A ABG and call #258 *** Second weekend of our search: a 1-bedroom in Hermosa Beach, a scant block from the sand. Chocolate brown carpet throughout, other features unremarkable. Rent is a stunning $600, half of my monthly take-home pay. Take it, Bob says, this place is great. I’m not so sure. Plus, the landlord wants a $1200 security deposit by 6p Monday. I don’t have it. I have a good job, but I’m less than two months out of school, with no savings, no credit card. Tell him you’ll take the apartment, Bob says. I’ll get the money for you. Yeah, RIGHT. Monday, 11:15a. The phone on my desk rings. I’ll be there in 30 minutes, Bob says, come meet me at the curb so I don’t have to park. I wait outside. He pulls up, rolls down the window, hands me a wad across the passenger seat—some from a cash advance on his Visa, some borrowed from guys in his dorm. People behind him honk. He waves and pulls away. That night I get keys to my first post-college apartment. Chivalry is not dead. *** P/T 11/15/02 5p Pt. with no signs of pain during Rx. Pt. tolerating HOB increase today. Needs rehab. Pt. awake and performing shoulder shrugs. *** A friend with a truck helps me move my belongings—I let Bob off the hook, he has finals. From curb and through the front door a mattress, linens and clothes in Hefty bags, printed music and boxed school notebooks, Lisa’s kitchen discards, a B+W television and Bullwinkle: a caramel tousle-haired guinea pig. Finally, the truck is empty; we sit on the carpet eating take-out pizza. My friend leaves. I go to bed in my new place. In the middle of the night, I walk to the kitchen for a glass of water. I reach for the switch. The flood of light sends an army of cockroaches into retreat. I scream and flip off the light. Stumbling back to bed, I am no longer thirsty. *** I get up early to take Don to the airport. His work obligations have necessitated a change in plans; he cannot stay until Monday morning, as planned, but needs to return to San Jose ASAP. American Airlines accommodates this without an additional fee. See? In some ways, I do lead a charmed life. After seeing him off, I stop in at Texas Station across the street from my apartment. My mission: Krispy Kreme. Why is parking so tight, so early? Plenty of open handicapped spaces, though. Hey. Guilty thought: I’ll get to use those soon. It disgusts me that entering a casino is the only way to get doughnuts for my kids. Ugh. 8:20a and I already smell like an ashtray. *** End of the week. I lounge on the sand, watching the sun drop into the water. Bob has finished his finals and is driving from Pasadena in Friday night traffic. I keep eyes fixed ahead, his arrival time is uncertain. It feels too needy to keep looking around. I decide to watch for the green flash. If Bob survives the commute, this will mark the first time I’ve seen him since money changed hands in front of City Hall. Soon, a hand on my shoulder. He sits next to me and takes off his shoes. He’s wearing a windbreaker and carrying a backpack. We stay until dark, then walk to a Mexican restaurant. La Penita, on Pier Avenue, serves no liquor but lets you bring your own beer. We eat chips and salsa beneath to a painted mural of St. Fernando Valenzuela de Los Angeles Dodgers. After dinner, we go back to my apartment. We watch TV. Bob plays with the guinea pig. It’s getting late. Does he want to stay? Do I want him to stay? Uh, this could get awkward. Bob heads into the bathroom. Hmmm. What were his plans. I sneak a quick look in his backpack. Toothbrush. (fresh!) Underwear (cheeky!) Clean socks. (practical.) Raid cockroach spray (awwwww...) ______________________________________________________________________ From Reid Kneeland" This is a multi-part message in MIME format. ------=_NextPart_000_0074_01C28EE3.E5A96700 Content-Type: text/plain; charset="Windows-1252" Content-Transfer-Encoding: quoted-printable Dear Bobwatchers, I still need to hear from Lynn Hinricks (& Alex), as well as Judy = Stonefield regarding 12/6-8. Because I am going to L.V. tomorrow through 11/22, any changes to your = immediate travel plans will need to be sent to the whole list. You may = send them to my home e-mail: (rakwef@earthlink.net) if you feel that = the information can wait. Keep praying, Ellen F. ------=_NextPart_000_0074_01C28EE3.E5A96700 Content-Type: text/html; charset="Windows-1252" Content-Transfer-Encoding: quoted-printable
Dear Bobwatchers,
 
I still need to hear from  Lynn Hinricks = (& Alex),=20 as well as Judy Stonefield regarding 12/6-8.
 
Because I am going to L.V. tomorrow = through=20 11/22, any changes to your immediate travel plans will need to be sent = to the=20 whole list.  You may send them to my home e-mail:  (rakwef@earthlink.net) if you = feel that=20 the information can wait.
 
Keep praying,
 
Ellen F.
 
 
 
 
------=_NextPart_000_0074_01C28EE3.E5A96700-- From jacque@oz.net Mon Nov 18 17:37:31 2002 From: jacque@oz.net (jacque@oz.net) Date: Mon, 18 Nov 2002 10:37:31 -0700 (MST) Subject: [Bobwatch] Shoulder Shrugs and Other Party Tricks Message-ID: <3056.158.252.200.196.1037641051.squirrel@www.oz.net> From the National Spinal Cord Injury Association Resource Center Factsheets (http://www.sci-info-pages.com/factsheets.htm: “The effects of SCI depend on the type of injury and the level of the injury. SCI can be divided into two types of injury - complete and incomplete. A complete injury means that there is no function below the level of the injury; no sensation and no voluntary movement. Both sides of the body are equally affected. An incomplete injury means that there is some functioning below the primary level of the injury. A person with an incomplete injury may be able to move one limb more than another, may be able to feel parts of the body that cannot be moved, or may have more functioning on one side of the body than the other. With the advances in acute treatment of SCI, incomplete injuries are becoming more common. The level of injury is very helpful in predicting what parts of the body might be affected by paralysis and loss of function. Remember that in incomplete injuries there will be some variation in these prognoses. Cervical (neck) injuries usually result in quadriplegia. Injuries above the C-4 level may require a ventilator for the person to breathe. C-5 injuries often result in shoulder and biceps control, but no control at the wrist or hand. C-6 injuries generally yield wrist control, but no hand function. Individuals with C-7 and T-1 injuries can straighten their arms but still may have dexterity problems with the hand and fingers. Injuries at the thoracic level and below result in paraplegia, with the hands not affected. At T-1 to T-8 there is most often control of the hands, but poor trunk control as the result of lack of abdominal muscle control.” At this point, Bob has partial cord compromise at C3/4 and complete cord injury at T4. Yes, the shoulder movement is a very good thing. From jacque@oz.net Tue Nov 19 15:24:49 2002 From: jacque@oz.net (jacque@oz.net) Date: Tue, 19 Nov 2002 08:24:49 -0700 (MST) Subject: [Bobwatch] Harry Potter Message-ID: <3168.63.178.196.77.1037719489.squirrel@www.oz.net> Saturday night, the kids and I walk to the movie theater inside Texas Station. Carly wants to see The Ring. Too scary for me. Gray and I line up for Harry Potter. The theater plays it smart—6 screens upstairs, all Potter all the time. I can’t sit through it---some scenes are little raw in light of Bob’s injuries. People landing on their backs. Breaking their arms. Jumping down holes. I am on edge and nauseated from the start. I chalk it up to a mini case of PTSD and leave early. I sit in the hall waiting for Graham. Carly’s movie finishes first and she comes upstairs to find me. When she questions my early exit, I give a quick rundown of my difficulties with the film. Too close for comfort, I say. It made me feel physically ill. You know, the way some veterans come unhinged at hearing fireworks? You should stop being so melodramatic, she sniffs. Your experience in no way compares to what people suffer in times of war. You should be ashamed to equate the two. As you might imagine, I do not react well. My response involves cussing and spitting with a few uses of “emancipated minor” thrown in for good measure. From the “You Only Notice These Things When They Happen To You” files: “Harry Potter and the Chamber of SCI.” Warning: spoilers ahead. If you, like me, have managed to make it to this late date without reading the Potter series…well…I will be revealing plot details. History: I do not like fantasy. I do not like science fiction. And I pick the read-alouds at our house. I am a churlish mother. That explains my Potter-fast. But how the rest of you nice folks have managed to escape reading this book is anyone’s guess. To the Potter-philes: Yes, I know. Great literary romp. Cultural icon. Don’t know what I’m missing. My loss. Uh-huh. Once the film starts, I am in horror. I lose count of the number of times characters are thrown on their backs. Harry and Ron are repeatedly tossed out of the car. Seat belts, anyone? That awful tree consumes their vehicle, jerking them back and forth, up and down, and my brain is screaming: Neck injury! Neck injury! Harry and Malfoy both fly backward and bounce hard during the tabletop duel scene. Harry withstands a hard landing at the end of the Quidditch game. The carnage goes on and on. A point by point comparison of literary fantasy vs. current reality: 1. Harry Potter and Ron Weasley take multiple hits to the thoracic spine as they are repeatedly tossed out of a car. Harry Potter and Draco Malfoy are thrown back, smack, during a wizard duel. Bob Lord lands on his upper back at the bottom of a mine shaft. Advantage: The Potter gang. They get up and brush themselves off. Hollywood magic! 2. Harry Potter and Ron Weasley are shaken and rattled as the Whomping Willow attempts to demolish their vehicle. Bob Lord’s head and neck snap forward and back with such force that the C3/C4 disc is completely expelled. Advantage: Again, those Potter Kids. No obvious cervical spine injuries. Watch out for ligamentous swelling, though. Kinda sneaks up on you. 3. Harry Potter’s arm is broken by a rogue bludger dispatched by Dobby. Gilderoy Lockhart exacerbates his condition by casting a spell that removes bone instead of mending it. Bob Lord experiences bilateral open wrist fractures attempting to break his fall down the mine shaft. Dr. Michael Monroe makes the initial repairs and installs hardware. Subsequent surgeries will be required. Advantage: Potter and Lockhart. For Harry, a clean break and no lacerations. Easy to mend, no surgery required, no wound to debride. For Gilderoy, a daring demonstration of his innovative orthopedic skills. Obliterating the bone is unfortunate, but, ya know, sometimes you gotta break a few eggs to make an omelet. 4. Hermione Granger catches a reflection of the Basilisk in her mirror. She is immediately petrified. Bob Lord is instantly paralyzed by a burst fracture at T4. Subsequent swelling causes cord damage at C3/C4. Advantage: Ms. Granger. If you’re gonna be immobile, do it in style! Private school uniform makes excellent hospital garb. True petrifaction eliminates having to listen to annoying visitors wanting to chat you up. And she can obviously still breathe on her own—or is fortunate enough that being anaerobic now doesn’t compromise her eventual recovery. Note to Hogwarts medical staff: she’s going to need anti-coagulants and SCDs to lessen the risk of blood clots. Reposition her often to minimize skin breakdown. 5. Harry Potter, Ron Weasley and Gilderoy Lockhart jump down a dark hole into the Chamber of Secrets. Bob Lord falls down a 30’ mine shaft. Advantage: Those wily Potter boys. 1. Seeing the hole in the first place. 2. Anticipating jumping down the hole. 3. Having second thoughts about jumping down the hole. 4. Making a conscious decision to jump down the hole. 5. Using good jumping form: upright posture, bent knees. 6. Smart enough to pick a hole that is, in reality, a steep slide. 7. Likewise, smart enough to pick a hole with a high-loft, leaf-like substance padding the bottom. It is at this point I rush out of the theater. You’ll let me know if I missed anything good, right? From jacque@oz.net Wed Nov 20 17:00:33 2002 From: jacque@oz.net (jacque@oz.net) Date: Wed, 20 Nov 2002 10:00:33 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/19 Message-ID: <3101.63.178.196.115.1037811633.squirrel@www.oz.net> 9:15a Ellen and Pam from Physical Therapy arrive to work with Bob. I ask for instruction on the best ways to keep his joints limber. Ellen demonstrates on one side of his body, and I imitate on the other. Pam watches me and corrects as necessary. They wear face masks and latex gloves. I do not. His feet are surprisingly warm. I am shocked by how skinny his legs have become. Flaccid flesh and muscle hang beneath the peaked rooftop of his shins. The knees are bony, thin skin drapes the patella, appearing and disappearing as I move his leg. Cupping his right heel in my left elbow, I gently stretch his Achilles tendon and the back of his calves. Then, holding his heel in one palm and supporting the calf with the other, I bend his knee and bring his leg up toward his belly at 12 o’clock, then out again and to 2, then out again to 10. All this is done with slow, controlled movements, the idea being to work each joint to as close of its full range as possible. This is the first blatant physical contact I’ve had with my husband in four weeks. His skin is warm, dry and familiar. His feet are smooth, save the toe callus he routinely develops when he plays racquet sports, most recently a Sunday morning badminton class at Gunn High School. Bob runs hot. Always has. I noticed it during our early years together, sitting next to him on the couch, feeling his arm across my shoulders, holding him close. Always steamy to the touch. As I tend to run cold, I appreciate his thermal gifts. Dancing with his Dad at our wedding, I discovered it was familial: shoulder warm beneath my hand, even through the layers of dress shirt and suit coat. So I am happy to find him still warm. It offers me something commonplace, something to hang on to that is still the same. These days, anything that approaches the familiar, the ordinary, bathes me in a tiny, momentary wave of reassurance. I have to assume, for now, that he is unable to feel my touch. He cannot respond to my attentions, rise to meet them, pull away. His passivity is uncomfortable for me. I meet no resistance with any of the stretches. His limbs are dead weight in my hands. The therapist and I alternate bicycling his legs. I wait for Bob to kick me in the teeth, offer some kind of protest-- but of course he does not. His eyes are closed for the entire session. Can he feel me at all? May I dream, at least, that my touch translates differently, more electrically, than that of strangers? They demonstrate stretches for the arm, hand and shoulder. I support Bob’s externally fixated arm and go through the motions. His hands are warm and swollen; the skin is peeling off the tops of his fingers. The thumb on the right hand does not have much range. I remember: when Brian, his Saturday nurse, took off the bandage to do pin care, I saw the large incision through which the pins were inserted in the metacarpal. I worry that I have hurt him. He does not react. The therapists say that I can do these movements with Bob several times a day. Perhaps that repetition is just what I need for this all to become a little more normal. Before leaving, they raise the head of his bed to 50 degrees. There are no immediate changes to heart rate, blood pressure or oxygen saturation numbers. The nurse says she will leave him in that position for a while unless he shows distress. 10:15a Bob is alert and still tolerating the raised bed. His eyes dart around—do you want to watch TV, I ask, BL please blink hard for yes but I get no answer. CNN or History Channel? No answer. BL can you look at me please—he doesn’t. Please look at me, you are hurting my feelings, and then he does, blinking rapidly. I unilaterally select the History Channel, at least it only broadcasts bad news that has already happened. I place the speaker near his ear. The narrator talks of Harriet Beecher Stowe and the social conditions under which she wrote Uncle Tom’s Cabin. We’ve lucked into something interesting, maybe it will appeal to Bob, activating some of his long-buried AP American History memories. 10:20a Tuh tuh tuh tuh tuh tuh tuh tuh tuh tuh tuh tuh…and the Mercy Air helicopters just keep coming. I sure hope they’re delivering pizza because my idea of their actual contents is a little too vivid. By the way, dug through a little mail today and opened some of the transport bills. A helicopter ride from Goodsprings to Las Vegas costs $6800. A one-and-a-half block ambulance ride from UMC to the MRI location is $640---EACH WAY. It is for to laugh! Ha ha ha ha ha ha ha ha ha ha ha. 10:55a Dr. Patel comes in. He tells me a tracheotomy is inevitable for Bob; he is going to talk to Dr. Stewart, the pulmonologist, about scheduling it. BL has been on the T-tube with humidified oxygen since Saturday, doing the Bernoulli thing, getting the good stuff every time he breathes on his own. Oxygen saturation numbers have been good. But Patel says that Bob doesn’t have a good cough reflex and is having trouble clearing secretions. They will not extubate until they can install the trach. As if it MATTERS, I am not happy about this. Just add it to the long list of things that are both horrifying and completely out of my control. One positive side of trach vs. tube: he’ll be able to speak. If it means he can finally talk back to all the crap he’s been dished over the past 23 days, it’ll be worth it. I’m damn near ready to grab my car keys and do it myself. 10:58a Tammy from Occupational Therapy comes in. Does many of the same arm exercises P/T did earlier. She really, REALLY wants some shoulder shrugs out of Bob. He either can’t or won’t. Deaf to both our pleas. Where are my car keys? 11:05a Vidya, the social worker comes to call. We are starting to anticipate the transfer process. She has spoken with someone at Stanford—who told her that (Santa Clara) Valley Medical Center is the regional spinal center, the place where someone with Bob’s injuries should be. So, although Stanford is the contracted provider with Cigna, Valley is what we’ll push for. I ask her some rather pointed questions about the mental health needs of patients’ families. Once you scrape the bits and pieces of the patient off the ground, I ask, is there anyone to help the family with the grieving process? She tells me that the hospital has nothing concrete in place to help the family in that way. In general, she says, the state of Nevada is notoriously poor on mental health issues. She offers to get me the name of an offsite clinic where the kids and I can go for counseling. I cannot grok making and honoring external appointments during my shipwreck period here. My friend Ellen is offering to take Bob’s BMW for service when she arrives in town: oil change, brake check, headlamps. My own tune-up will have to wait until we’re back home. 11:15a Another Mercy Air helicopter. Bob falls asleep. I go back to the apartment where the kids are up and bickering. They shower and eat and we all return to the hospital. From the parking lot, on the sidewalk, in the hospital halls and up through the elevator: I am flanked by one child on either side. We stand 3 abreast, no one ahead, no one behind. This is SO not like us. I understand it. Later in the afternoon, we go to the airport: Ellen (Mistress of the Travel Grid) has flown in from Southern California. She will stay until Friday morning. For me, she brings perspective, empathy, and a hand-me-down cotton nightgown. Her kids have written letters to my kids. From Jeremiah (9) to Graham (9): Hi graham. I’m sorry about your dad. U must feel BAD. I hope your dad gets better soon. Take some deep breaths. Your friend, Jeremiah p.s. here is a Yu-Gi-Oh! card. It is blue-eyes white dragon. (It is a GOOD card.) We all go to see Bob. Ellen and the kids stay a while, then she offers to take them for dinner and a movie. I give her keys to the BMW. Strange car, strange city, strange kids. She is quite intrepid. I am less so. I stay with my husband. More tomorrow. Jacque From jacque@oz.net Thu Nov 21 07:04:56 2002 From: jacque@oz.net (jacque@oz.net) Date: Thu, 21 Nov 2002 00:04:56 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/20 Message-ID: <4119.206.133.195.7.1037862296.squirrel@www.oz.net> Late in the morning I engage in a lengthy conversation with Dr. Terry Lewis, the admitting physician who first saw Bob when he was airlifted in 10/27. This is the first time I’ve seen him in person; my only previous contact was that panicky phone call from Seattle. My first words to him: “Is my husband alive?” Bob is scheduled to be “trached” and “pegged” Friday afternoon at 2p. The tracheostomy is a fairly standard surgery; as eager as I to hear Bob’s voice, though, he will start with a: Shiley tube with an inflation cuff…then transition to a… Foam cuff—more comfortable, less risk of stenosis and necrosis Stenosis=constricted opening Necrosis=death of a portion of tissue or an organ in the body …finally transitioning to a fenestrated trach. From tracheostomy.com: “Fenestrated tubes have an opening in the tube that permits speech through the upper airway when the external opening is blocked.” So, even with the surgery scheduled for Friday, it will most likely be over a full week before I can hear my husband speak again. Pardon me for harping on this again and again, but it’s a really big deal. Regardless, Dr. Lewis says I will be amazed to discover how proficient I am at lip reading Bob’s airless words; without the tubes in his mouth, he can form the syllables more completely. I’m dubious but hopeful. While he’s under anesthesia, they’ll also do: PEG—Percutaneous Endoscopic Gastronomy. From the Medicomm.net site: “Percutaneous endoscopic gastrostomy (PEG) is a surgical procedure for placing a feeding tube without having to perform an open operation on the abdomen (laparotomy). A gastrostomy (a surgical opening into the stomach) is made percutaneously (through the skin) using an endoscope (a flexible, lighted instrument) to determine where to place the feeding tube in the stomach and secure it in place. The aim of PEG is to feed those who cannot swallow. Irrespective of the age of the patient or their medical condition, the purpose of PEG is to provide fluids and nutrition directly into the stomach. Local anesthesia (usually lidocaine or another spray) is used to anesthetize the throat. An endoscope (a flexible, lighted instrument) is passed through the mouth, throat and esophagus to the stomach. The surgeon then makes a small incision (cut) in the skin of the abdomen and pushes an intravenous cannula (an IV tube) through the skin into the stomach and sutures (ties) it in place.PEG takes less time, carries less risk and costs less than a classic surgical gastrostomy which requires opening the abdomen. Therefore, when feasible, PEG is preferable to a classic gastrostomy.” Class dismissed. Ellen brings Carly and Graham to the hospital mid-afternoon. Go have some fun with your kids, she says, I will stay here and take care of Bob. Graham, Carly and I drive to the Stratosphere and stroll through the place. Much less skanky than the Fiesta and Texas Station casinos near our apartment. We stop in for a late lunch in the café—they tell me the prime rib is not yet out of the oven, even though it is after three. Nothing else sounds good; I order nothing but end up stealing a few bites of Graham’s pancakes and an errant tomato from Carly’s BLT. We walk among the shops and buy tickets to ride to the top. The views from the observation deck are incredible. I mean, it’s no Space Needle, but…;) I have quite a bit of trouble finding UMC from that lofty perch; we locate it by the Texaco station at the corner of MLK and Charleston where I get gas for Bob’s car. Wave to your Dad, kids. They roll their eyes. Somewhat surprisingly, both Carly and Graham decline the opportunity to ride the roller coaster. I think we’ve all had enough adrenaline for this month and then some. We leave Stratosphere and drive to the mall. We’re spending money just to feel good, but I don’t care. Tactics Ogre for Graham’s GameBoy Advance, and a green cotton sweater for Carly. As I am signing the final charge slip, my cell phone rings. It is Ellen. Bob is unhappy, she says, heart rate and blood pressure both up. The nurses are giving him Tylenol for the fever and morphine for the pain but nothing makes much difference. I asked if he misses you and he blinked yes. I relay this information to the kids. We were on our way out anyway. Carly brings her hand up to the side of her face and rings an imaginary bell. I shoot her a dirty look. We drive back to the hospital and go up to Bob’s room. My return calms him a bit, but the numbers are still inflated. Dr. Patel is called and he orders Lopressor. Digoxin, which Bob was given last week, addresses only heart rate. Lopressor works on both heart rate and blood pressure. Wanda brings me the consent papers for Friday’s surgery. I feel like Pontius Pilate each time I sign. Too much Catholic school, I guess. Debbie, Bob’s nurse for the evening, comes on at 7p. She hangs a new antibiotic, Rifampin, to continue the battle against staph bactremia. She warns me the foley will glow fluorescent orange in a bit; do not be alarmed. Several people slip the word “transfer” into their conversations with me today. As in, “once he’s trached and pegged, he can be transferred.” Or “Oh, I hear you folks will be heading out to California soon.” I pore over the chart but can only find the social worker’s notes written yesterday requesting medical records be faxed to (Santa Clara) Valley Medical Center. Transferring him sooner rather than later would help with some thorny childcare issues post 12/2…but we’ll make it work either way. Lisa tells me that Simone (3) was calling out "Mama, mama" in her sleep last night. I call her on the phone. I'll see you in 7 days, I say, do you know how many that is? One hand and two fingers, she says, you already taught me that. Oh good, I say, laughing, you haven't forgotten your Mama. I won't forget you, she says, Aunt Lisa shows me your picture every day. This is so hard. There is no good solution. Stay with the kids, shortchange BL. Stay with BL, shortchange the kids. Move the entire family here, disrupt their lives even further. Either way, I lose. I am so tired. Good night. From jacque@oz.net Fri Nov 22 06:21:32 2002 From: jacque@oz.net (jacque@oz.net) Date: Thu, 21 Nov 2002 23:21:32 -0700 (MST) Subject: [Bobwatch] The Bob Report 11/21 Message-ID: <4442.158.252.200.112.1037946092.squirrel@www.oz.net> Ellen has arrived ready to be put to work. She makes calls, sets up appointments and makes sure the appropriate personages are where they need to be. This morning, Desert BMW of Las Vegas. 7:00a. She sets up with a book in the waiting room and I catch the complimentary shuttle to UMC. The damages: $590. Oil change, new brake pads and rotors, low beam head lamp replaced. I know my prickly market maven husband would have negotiated a better deal. But we haven’t heard much from him lately so I put it on the Visa. Cha-ching! BOHICA BOHICA (Bend Over Here It Comes Again). *** Dr. Patel stops in to see Bob. We have clipped the pertinent parts of the disability application—the ones that need his input --- to the chart; he ignores them and leaves the floor. Wanda, the nurse, pages him and tells him he missed some important paperwork. I’ll be back to fill them out later, he promises. He does not return. Vidya calls and talks with Wanda. The admitting doctor at Valley needs to talk directly with Bob’s attending physician before the transfer arrangements can proceed; Dr. Patel has not returned his calls. See a trend here? Dr. Patel is one righteous babe— strides into SICU like some Jean Paul Gaultier runway model , handsome face, dressed to kill. Now I like eye candy as much as the next girl-- but this guy is starting to piss me off. *** This afternoon, Graham and I make two separate trips to the cafeteria. The first one ends in a stalemate because I refuse to pay for his chosen lunch: Cool Ranch Doritos, chocolate pudding, and a Fruitopia. You’re a little under the weather, I say. Let’s try to get some protein in you and cut down on the sugar. That virus doesn’t need any more fuel. This results in much stomping and quiet growling. We return to Bob’s room without food. A few minutes later, we try again. Before heading down, I extract a promise that a cheeseburger and fries will be purchased with NO MORE FUSS. (OK, not exactly health food. But a bit more substantial than the above triumvirate of junk.) He scuffs his feet all the way to the cafeteria and sulks the entire time we stand at the grill. On the way through the checkout line, we run into Dr. Casey, who asks how Bob is doing and picks up the tab for Graham’s lunch. *** Dr. Casey is the surgical resident who intubated Bob way back on 10/29, two days after his fall, my birthday, the same day I first heard the word “paraplegic” used to describe my husband. My second exposure to him was that same evening, when Bob was transferred up to SICU. So it’s a late night in Trauma, and I’m ready to spend the night on a chair next to BL’s bed. With no warning, the nurse says we’re going to move him to SICU. You’ll need to go home, they don’t allow all-night bedside visitors like we do. I’m not going anywhere, I say, I came prepared to stay the night and that’s still my plan. Oh the transition period is always hard on the family of a quad, he clucks sympathetically. I pick up my belongings and Bob’s floral arrangements and follow them in tears to the elevator. Quad? Why the hell did he say that? The SICU nurses settle Bob into his new room and gently recommend that I go home and get some rest. He’s sedated, they say, he won’t even know you’re here. I walk out of Bob’s room and out to the desk. I’m not going anywhere, I say between clenched teeth, I’m not leaving until someone gives me a complete and total list of my husband’s injuries and his prognosis. I’ve got the spinal surgeon telling me para, and some nurse calling him a quad, he’s been here two full days and I’m still getting information in stingy little pieces. (I’m crying by this time.) This scenario may be very normal to you but my entire life has just been tossed in the dumpster so I’m not going anywhere until someone can give me a list of everything that’s wrong. I’ll wait. The nurses keep their cool. If you come early in the morning, one of them says, you can probably catch the spinal surgeon when he makes his rounds. You can ask your questions then. Why can’t you tell me, I ask, I’m sure it’s all there in the chart. It has to be the doctor, they say, you have to get the information from him. I’m not leaving, I say, I’m not waiting until morning. Give me the chart so I can read it myself. We can’t do that, they say, you are not allowed to read the chart without your husband’s OK. The patient can walk right out here and pick it up off the nurses desk anytime he wants, but you may only look at it with his permission. Well, it sure doesn’t look like my husband is going to get out of that bed anytime soon, I hiss, and he’s sedated and on a ventilator so I’m not thinking he's going to have a whole lot to say, do you? They call Dr. Casey. I think they woke him up because he comes in rubbing his eyes. So why does the doctor say para and the nurse say quad, I ask him. What does it say in there. I need to know the entire story. He opens the chart and starts to read. T4 burst, ASIA A, C4 flexion distraction…bilateral comminuted wrist fractures… I am scribbling as fast as I can. Say that again, I didn’t get it all. He closes the chart. Look, he says very kindly, we’re all very tired here. I’ll be happy to go through it with you tonight, but why don’t you schedule a patient care conference with Dr. Vater? He can explain it much more thoroughly. You know, I can’t tell from these notes about para vs. quad. If Vater told you para, that’s probably what he knows up to now. But get an appointment to talk with him. The nurses can help set that up in the morning. His gaze is so direct, his manner so compassionate, I instantly know he’s right. Thank you very much, I say to all of them, I’m sorry to have behaved so badly. Don’t worry about it, they say, and I sniffle off home. *** Dr. Iwamoto from Desert West Surgical Group is scheduled to do the trach and PEG tomorrow at 2:30p Dr. Keamy from anesthesiology came to talk with Bob late this afternoon. The procedure should last about 45 minutes but there will obviously be time before and after for anesthesia and post-operative recovery. Ellen proposes a contest: Bob Speaks. I am steeling myself for torrents of rage and despondency but maybe we could try to have a little fun anyway. What will his first words be? Any takers? Send in your ideas. More tomorrow— Jacque From jacque@oz.net Sat Nov 23 19:08:32 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Sat, 23 Nov 2002 11:08:32 -0800 (PST) Subject: [Bobwatch] The Bob Report 11/22 Message-ID: <3041.168.191.209.183.1038078512.squirrel@www.oz.net> I took Ellen to the airport this morning. I will miss her. She was a whirlwind of competency and goodwill during her time here. She bought groceries, took the kids to the movies, cooked, organized my apartment, treated the couch and carpets with a smoke-neutralizing spray, stayed with Bob so I could play tourist with my children, bought me vitamins and insisted I take them, took Carly for an eye exam and new glasses…doesn’t it exhaust you just reading it? She was unfailingly gracious and upbeat throughout. Which is better than I can say for myself these days. Thank you, Ellen, for all you do. *** Summer of ‘85, I continue my job with the City of LA. Bob returns to work at Teradyne. Some evenings we meet in Hermosa Beach, others in Pasadena. It is 34 miles from my apartment to his summer job; his Caltech dorm is five miles closer and an easier commute overall. I usually insist on him coming my way, though, having already done the undergraduate thing to death. My place is larger and in a more summer-friendly location. I’m forking over half my take-home salary for rent –need to get my money’s worth. Bob is agreeable to this; he appreciates the natural splendor of the Pacific Ocean and the unobstructed views of roller blading Asian babes in thong bikinis. Bob’s room in Blacker has a sky bed, accessed by a rope ladder. He built it himself when he first moved in; on his back, the tip of his nose is less than a foot from the ceiling. When I stay, I sleep chaste on a foam chair that folds out into a futon. Avoiding vertigo and claustrophobia keeps our relationship possible. My job has me up at 5:45 in the morning, I catch up on weekends by sleeping late. BL is incapable of such sloth and slips out early to run on the beach. In bare feet, he pounds the sand pier to pier, Hermosa to Manhattan and back. If I am lucky, he returns with doughnuts and milk from a local stand. Sawing logs uses up a lot of calories. *** Dr. Patel breezes in to announce that he’s completed his portions of the disability paperwork. In addition, he’s paged the admitting doctor at Valley Medical and is expecting a call back. Vidya the social worker has made much progress on Bob’s upcoming transfer. Valley Medical turns out to be a contracted provider for Cigna; transport and rehabilitation should be covered by insurance. They're looking at early next week--Monday, Tuesday or Wednesday, provided there are no complications from the trach/PEG surgery this afternoon. They are still trying to arrange an air ambulance for Bob; the company Cigna gave as their contracted provider is apparently no longer in business. Vidya makes multiple calls and cannot track them down. Cigna apologizes for sending her on a snipe hunt but will nonetheless require three quotes from local air ambulance companies. One adult may travel in the plane with Bob. I'd like this to be me, of course, but I do have to figure out a way to get his car and our kids back to Palo Alto. *** Gorbachev. Live Aid. Rainbow Warrior. My ’76 Celica is overheating. We drive it everywhere, though, a previous boyfriend has soured me on American cars and Bob’s ’78 Monte Carlo makes me think of shuffleboard and plaid pants. My attitudes about money puzzle him. “If you’re sick,” he says, “you should go to a doctor. That’s what your insurance is for. If your car is overheating, take it to a mechanic. You have a good job. Use your money to make your life more comfortable.” This is very much against how I grew up. My mother raised three daughters by herself, and money being tight meant broken things stayed broken. We went many months filling and boiling large Dutch ovens on the stove for baths; a neighbor relighted the pilot and we were back in hot water. Likewise, several chilly winters went by before a concerned co-worker diagnosed and repaired our forced-air heater—simple as changing out a $15 fan. So in this way, I am my mother’s daughter. Bob stops trying to reprogram me and decides to fix the car himself. One hot Saturday, he drives the Celica up behind the apartment and sets to replacing the water pump. Poor guy breaks the bolts TWICE (over-tightened and snapped by the temperature change in the engine) and has to have them drilled out each time. He is doing me a favor, so my contribution is cold drinks and generalized cheerleading. The swearing fits don’t start until that first set of ping! ping! ping! Suddenly, I have a pressing obligation inside the apartment. *** Our imminent return to California has me uneasy. For the first time in this ordeal, I feel true anxiety. Although it is hard for me to imagine anything being more difficult that what has gone down in the past four weeks, what lies ahead could be much worse. My ADD brain does well in a crisis—with enough stimuli to maintain focus and concentration, I can hold together. I may be unreasonable, volatile, but at least I’m present and not depressed. My life has had a very narrow focus since 10/27. Be with Bob, write, eat (or not), sleep (or not). Las Vegas has been my own little cocoon of grief. I have missed my children, though, and have longed to have all of us back together. Once home, though, I will be expected to resume "normal" family life--getting kids off to school, helping with homework, walking the dog, keeping the household supplied, making meals, paying bills, providing entertainment. All of this will have to be done minus the companionship and support of my (formerly) competent and hands-on husband. But nothing will be "normal"—we are all devastated by this. So we’ll stumble through the next few months, yelling at each other because we’re not allowed to angry with Bob, revamping our expectations about life from here on out, reconstituting our family molecule by molecule. *** I order a new pair of hard contact lenses from a local optometrist; I honor the break-in schedule but they never get comfortable. I worry something is wrong with the fit. One night, I wake up in agony, the sensation of pins and glass shards on both sides. I crawl to the living room and roll back and forth on the carpet, palms cupped over my eyes. Bob hears me and gets up. We’re going to the emergency room, he insists, you should not ignore something that hurts that bad. You have health insurance, and you’re going to use it. I’ll go get the car, he says. I’m in no position to argue. One problem: I have a rough idea where a hospital might be, but can only locate it by landmarks. I don’t know street names and I can’t see. BL sees fine but can’t work with my navigation clues. Turn left at the corner, you know, the one with the Union 76 station, not that one, the one across from the Italian bakery in Redondo Beach, then bear left and go up the hill. We arrive after a comedy of wrong turns. Bob walks me in and fills out the paperwork. I am diagnosed with corneal abrasions and treated with two kinds of eye drops, antibiotic and anesthetic. Both sides are patched and I am sent home to recuperate. “Nothing heals faster than a scratched cornea,” the doctor says, “almost as good as mucous membrane.” We head toward my apartment. Bob has a better idea where we are now. He pulls the car over to the curb, wait here, he says, I’ll be right back. In a minute he returns with a bag of warm doughnuts. The local shop has just opened, and they are deliciously fresh. It is 5:00a. Food really does taste better with your eyes closed. In the morning, Bob has a class he can’t miss; he feels terrible but has to get back to Pasadena. I call in sick—Bob knows the number by heart and dials it for me. Before driving away, he makes me a nest of pillows and blankets on the living room floor, arms length from water, snacks, radio & phone. I sleep on and off all day, waiting for his return. He lets himself in late in the afternoon. Why do you have the kitchen window open, he asks. I haven’t left this spot except to crawl to the bathroom, I say. Do you have your purse? he asks. Oh no. It is gone. During the day, while I was both temporarily blinded and asleep, someone slid open the kitchen window and stole my purse from the counter. Terrifying. I feel foolish to have left it in full view. Bob finds my purse in the trash cans behind the apartment, cash, ID and credit cards missing. He calls to report the theft and then runs to the local True Value for slide controls for the windows. *** Vidya has passed on my mental health rantings to Dr. Cooley, the lone psychologist who services UMC. He had been by a few days earlier to assess Bob’s mental condition, but was unable to complete his evaluation due to the intubated and withdrawn state of the patient. No such luck with me. We go to the nurses’ lunchroom for privacy. You know I can’t prescribe, don’t you, he says. How can I help? Why does this hospital not have a program in place to address my family’s mental health issues? I ask. And even if you can't help me, why did it take a special request for you to come evaluate Bob? Wouldn’t you just assume that someone with this level of injury and this disheartening a prognosis would require attention in that area? SSRIs, benzodiazepines, whatever, you guys should stick this stuff in the water fountains in Trauma. Throw it at patients and their families like Pez. To his credit, he hears me out. I relay Vidya’s comment about the abysmal state of mental health care in Nevada. He agrees and specifically outlines recent budget cuts in that area. You might want to go to amazon.com, he says, and do a search on the word “caregiver.” There are some excellent books, a wonderful resource. You seem like a very smart woman. You have a tremendous life change ahead of you, and are going to need some help. Don’t be afraid to ask for it. I thought I already did. *** Labor Day weekend, 1985. Bob’s 20th birthday. We drive north to Los Gatos to visit his Dad Dick and brother Don. This is my first time meeting both, and shame on me for not planning better. Three Lord men in one condo produces an unstoppable barrage of play-combative banter. I am instantly one of the family, my grammar corrected, all my logic inconsistencies pointed out. Ah. I suddenly long for estrogen. Dick draws me a map to the mall. The weekend is illuminating, but stressful. Even so, I am happy for the occasion: I no longer have to apologize for my boyfriend being a teenager. *** Bob comes back from his trach/PEG surgery. He did really well, they tell me. The doctor says they needed to unbuckle the halo vest to access Bob's abdomen; Vater OK'd it provided the shoulder supports were not adjusted. He is still coming out of the anesthesia. He flutters his eyelids on and off. I compliment him on his new tube-free look. I leave to retrieve Judy from the airport. She is surprised how cold the night air is. She travels to Vegas yearly in her role as a product manager for a cosmetics company. Their trade show rolls into town each July. We return to the apartment to find Carly trying to teach Graham blackjack. She has removed Bob’s get-well bouquets from the table. Ruins the casino atmosphere, she tells us. I gotta get these kids back to Palo Alto. To that end, an intrepid soul has volunteered to drive my kids home so I can be with Bob in the air ambulance. Thank you, John, thank you. From jacque@oz.net Sun Nov 24 20:42:31 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Sun, 24 Nov 2002 12:42:31 -0800 (PST) Subject: [Bobwatch] The Bob Report 11/23 Message-ID: <3045.206.133.195.84.1038170551.squirrel@www.oz.net> Re-admit SICU –Dr. Patel, Viren –inpatient status Dx quadriplegic, S/P fall Cond. Guarded Vitals: routine Act: bed rest with Halo on at all times *** When I arrive in the morning, Bob moves his lips to make words. It goes by so fast, I can’t make out what he’s saying. I am so sorry, BL, say it again. He doesn’t…or can’t. His tongue drags across parched lips, darting in and out, investigating the mustache growth that is starting to overhang his upper lip. I ask the nurse for ice chips; he can’t have that yet. She offers me water from the sink and a small green sponge on a stick. It would be more refreshing cold, I say, how about a little ice in the water to cool it down? She complies. I wet his teeth and lips. He vigorously mouths several spongefuls of cold water. *** Okay to D/C sutures and staples on forehead and knee. Social services transfer plans for coming week. Spoke with nurse at California facility. *** Before my arrival, Dr. Monroe came in to examine Bob’s wrists. He has ordered bilateral x-rays and will change the splinting according to what those reveal. Judy comes to the hospital to see Bob. She talks with him for a few minutes, tears in her eyes. It’s hard to see him like this, isn’t it, I say. She pulls a latex glove from the box, inflates it, ties it off, draws a comical face centered on the thumb as nose. This gets tacked to the bulletin board with the other family portraits. She leaves to take Carly and Graham on a few errands. Carly wants black indoor soccer shoes--for fashion, not function. I would like Graham to get his hair cut. After much searching, they can’t find the shoes. Graham makes it crystal clear that he has no interest in sitting in a barber’s chair. In solidarity with his Dad, a Lord men boycott against invasive grooming. OK by me. Judy finds a sweater and scarf at Gap. They all have the benefit of an outing away from the hospital. *** POD# Trach and PEG—feedings started this a.m. Nursing took vest off –PEG site clean 130s/70s HR105-130 Tc 38’ trach in good position, min breakthrough bleeding on dressing PEG site clean; tube working well Halo and vest in place *** Bob’s Aunt Jan, Uncle Jim McLaughlin and Grandma Millie arrive mid-afternoon from Cleveland. Millie, who is 82, does not like to fly and has done a stellar job of avoiding airplanes for close to 15 years. She walks up to the head of the bed. Bob, it’s Grandma, I’m here. He opens his eyes. For a split second, the corners of his mouth turn up. *** A/P POD# trach and PEG, doing well, cont. local care, ent. to follow --quadriplegia S/P fall ORSA in blood, ID following *** From late afternoon on, Bob battles both fever (38.6C <101 F>) and tachycardia, HR low 140s to low 160s. The nurse calls Dr. Patel, who orders continued Tylenol and two doses of Lopressor, a beta blocker. First Digoxin. Then Lopressor, Lopressor and more Lopressor. My 37 year old husband, on heart medicine. Judy takes Carly and Graham to see Die Another Day. This is not the type of movie I would normally allow my nine year-old to see. Present extraordinary conditions have me relaxing some of my standards. I choose to stay with Bob. They retrieve me after the movie and we head to Inka for dinner. Back at the apartment, Judy and I go to bed. Carly stays up late researching blackjack strategies on Google. In the morning, she tells of her progress. I can now split, I can double down. Hey Graham, don’t split tens, OK? That’s just stupid. So Graham, if you get two aces, you can split them and make two hands. We need to get some chips, Mom. We should play for money. From jacque@oz.net Mon Nov 25 15:39:45 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Mon, 25 Nov 2002 07:39:45 -0800 (PST) Subject: [Bobwatch] The Bob Report 11/24 Message-ID: <3084.63.178.205.233.1038238785.squirrel@www.oz.net> Michael Monroe M.D. comes in the room, wearing casual clothes, no ID badge. He does not introduce himself, and even the nurse reacts to him with a bit of a start, someone with no visible identification manhandling her patient. He has come to take the splints off Bob’s arms. His face looks slightly familiar; his voice I can place almost immediately. I spoke with him at his home the evening of November 6, the night Bob had his wrist surgery. At that time, I thought I had never met him, but I now realize he was one of several specialists who popped into Trauma 10/28. “Bob you’re going to need surgery on those wrists but let’s get your back taken care of first.” Nurse Shari and Dr. Monroe work together; a finely synchronized team slamming much too quickly through what I think should be the painstakingly gentle job of unsheathing my husband’s wrists. Starting on the left side, they unwrap the ace bandage, then shred apart the cottony padding. The splint is pulled out. Bob’s left hand flops, lifeless. OK. OK. So I know my husband is quadriplegic. I hear it from the doctors. I read it in the chart. It is the first word that follows “37 year old male” when teams come through for morning rounds. I’ve been bludgeoned over the head with it on a daily basis since Halloween. It still turns my stomach to see that hand dangling useless. Steinman pins emerge like half wickets in a cluster of four inverted capital ‘L’s. They exit the inside of the wrist right where his watchband would rest. Shari shows me the ends of the bent pins, sharp as a nail point. She quickly caps them with white plastic. Dr. Monroe has moved to the right side. “You might not want to watch this,” he says to me, “there are still open incisions here.” I tell him I’ll be alright. Once the bandage and the padding are off, I can see the exit wounds for the first time: a large angry “S” on the inside of the wrist. With both his forearms bared, Bob now looks less like a mummy. Both Dr. Monroe and Shari comment on how well Bob’s skin has healed. I’m going to have to take their word for it. Dr. Monroe tells me he’ll be in contact with the folks in California to recommend future action on Bob’s wrists. “I like your hair,” he says, “did you just do that? I don’t remember that from before. Do you listen to a lot of Bob Marley?” I make some comment about how this might be the thing that tips me toward smoking ganja. He laughs, and leaves the room. Please don’t write that in the chart, Dr. Monroe. Shari cleans dried blood off the hand and wrist with an alcohol wipe. She then swabs the wound area with Betadine . The stitches are clipped and pulled out one by one, dropped like dazed little spiders onto a gauze pad. Bob’s heart rate has been climbing steadily since Monroe first came into the room. It is now in the low 160s. I dab his face with a cool washcloth. BL, give me a hard blink if you’re in pain, I say. No blink. Shari is going to be done in just a few minutes, try to stay calm if you can, I say. She pulls a few stitches, lays down a Steri-strip. Another few stitches, another Steri-strip. You are probably not surprised that these are a 3M product, she comments. They will act to support the new scar tissue to prevent the wound from opening again. Bob has developed a pressure sore where his thumb was splinted up against a protruding bolt on the external fixator. We are now to position his hand with the thumb tucked under, so that spot can get some air and receive no further irritation. *** Bob’s tongue is frantic today; extending its full length and waggling back and forth. This is very hard to watch. BL, I say, I need to know whether that movement is voluntary or involuntary. Can you stop doing that, just so I’ll know you can, or at least slow it down. There is no change in the speed. This frightens me. But I try not to give it too much import. He doesn’t need any pressure from me. I turn away to anesthetize myself with the computer. His Aunt Jan says, “Slow down. Stop.” And he does. But it quickly resumes again. Shari takes a more direct approach. Close your mouth Bob, she says, you’re looking like a baby bird. You’re going to dry out your mouth. Your family can’t give you any more water for a while, Bob. You’re going to have to keep your mouth shut. She goes on to tell us about ptalyn (?), a salivary enzyme that starts the predigestion of proteins. In patients who are recently trached, there is swelling and liquids will often wash down the wrong pipe, into the lungs. Not a good idea to have anything predigesting your lungs, if you get my drift. From jacque@oz.net Tue Nov 26 02:02:39 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Mon, 25 Nov 2002 18:02:39 -0800 (PST) Subject: [Bobwatch] The Bob Report 11/25: Leaving Las Vegas Message-ID: <3053.158.252.201.33.1038276159.squirrel@www.oz.net> Wow. The details are coming fast and furious. Bob will begin his Odyssey back to California tomorrow morning, 11/26, at 9a our time. We will be traveling with MedFlight, an air ambulance service. Bob brings all his monitors, hardware and medications; I am allowed a single bag that will stay on my lap. John R. arrives in town tonight; he, Carly & Graham will begin their drive to Northern California at roughly the same time. Today Bob saw many of his doctors for the last time; he was clean-shaven (for the first time in 4.5 weeks), his Halo checked and tightened, some of his lines changed. I was given a second fleece lining for his vest, and told how to wash it at home. (Woolite, cold water, gentle, air fluff dry--no heat. Kinda like a wool sweater.) Tomorrow before we leave I walk down to radiology to retrieve and hand-carry his films. I do not know what time we will arrive at Santa Clara Valley Medical Center. All I know is that I will sleep in my own bed tomorrow night. I am just sorry it will be without BL. I have discontinued my Mailboxes, Etc. Las Vegas address. They will continue to forward mail and packages until the end of the year, at least. Starting tomorrow evening, the (Deerr-)Lords can be reached at: 993 Moreno Ave. Palo Alto CA 94303-3732 650) 739-0870 My cell remains the same: (650)387-5448. I will resume Bobwatch as soon as we're settled. Thank you all for your continued assistance, kindness and words of encouragement. Take care and please think buoyant thoughts. Jacque From jacque@oz.net Wed Nov 27 21:58:15 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Wed, 27 Nov 2002 13:58:15 -0800 (PST) Subject: [Bobwatch] The Bob Report 11/26 Message-ID: <3070.209.179.217.103.1038434295.squirrel@www.oz.net> Tuesday, November 26, 2002 7:45a I arrive at UMC. An hour earlier, I loaded the car and turned in my apartment keys. John, Carly & Graham are already on the road, BMW packed to the rafters. Bob's friend Jack is sitting in the room. I notice that that Bob’s arms have been splinted and re-wrapped for transport. They did that yesterday, Jack said, you didn’t see it when you came to say goodnight? Today’s the day. MedFlight folks come at 9. I walk to radiology to get Bob’s films. I hand over a signed form and IDs; they give me two big jackets of x-rays and reports. Back up in SICU, Wanda does final paperwork; she fills a white envelope with copies of pertinent chart information, discharge orders, EKG strips, radiology reports. Jack and I sit around talking—spouses, babies, dogs. Vidya stops by to wish us well. Is there anything else she can do? Several of the nurses give me hugs. “Bob is very lucky to have such a loving wife,” one of them says. Aw, pshaw. I had been told 9 for departure but they don’t show until 10. “Right on time,” Wanda remarks. 10 was the plan until late afternoon yesterday, when it was changed to 9. An hour one way or the other doesn’t make much difference. MedFlight employees Denise (the flight nurse) and Jason (the flight paramedic) introduce themselves and get to work. Three guys in red shirts and blue pants wait with a gurney just outside Bob’s room. Jack and I stay out of the way. Denise and Jason collect pertinent data from the nurse: last time suctioned, most recent dose of morphine. All Bob’s monitoring devices are changed. He is transferred from hospital oxygen to a MedFlight tank that is placed on a blanket between his knees. I am given several forms to sign. The gurney is rolled in. I leave the room under the pretense of giving them extra space. In reality, I am still not ready for visual proof that my husband can't move on his own. Jack and I follow the team out of SICU and toward the elevator. “Let us know how he does in California,” the nurses say. Outside, in the ambulance bay, I am directed to ride shotgun. Hey, Jack, I say, get your car and follow us to the airport—now’s your chance to be an ambulance chaser. He declines and we hug goodbye. Bob is loaded into the back. They start the engine, FM radio blaring to life--Prince, 1999. Normally I am OK with the hits of the 80s and beyond but today it seems inappropriate. The driver turns it up. I cringe a bit. He doesn’t notice. We drive 4 miles north on Rancho, past my old Budget Suite digs, into the North Las Vegas Airport. The jet is waiting there, a Lear. I pull out my camera. You’re taking pictures? the pilot laughs. Yeah, I say, for the miniseries. They prepare to load Bob onto the plane. I stand on his left, my hand positioned to shade his eyes from the Nevada sun. My bag is taken and stored. I am told to get on the plane first and sit in the back. Bob is carefully slid through the door, his feet near my knees. Jason and Denise flew in from their home base in Albuquerque a few hours earlier. The Grand Canyon was beautiful this morning, they say. Can I get my bag? I ask. No, it’s stored too deep, they say. I have my camera but should have also grabbed my notebook and pen. This inability to write brings tears to my eyes---but I shame myself out of it because these tears are about my own stupid frustration and not Bob’s. The take-off is loud, but smooth, and in no time we are soaring over western Nevada. Bull’s-eye circles of tract homes, incredible desert, snow-grouted mountain tops. Suddenly, I am freezing from the knees down; I imagine the Lear providing mere tinfoil between me and the elements. It’s -70 outside, Jason says, don't kid yourself. Yeah, says Denise, we’re up at 37,000 feet, the highest part of the troposphere, pretty damn cold. But we’re intentionally keeping it cool in here because your husband has a fever. Better cold than too hot, she says, I can only take off so much clothing. Maybe so, I think, but just imagine the new dimension that could bring to the Las Vegas-based air ambulance industry. I am offered a blanket, but it doesn’t help much. I reach carefully beneath Bob’s sheet and cup his warm calves in my palms. The flight takes just over an hour. Denise sits at Bob’s head, suctioning him periodically. Jason records the vitals from the monitor and writes the flight report on a metal clipboard. I know we’re home when I first I see salt flats, then the enormous hangar at Moffett Field. We land without incident at the San Jose Jet Center, San Jose Airport. Another ambulance is waiting to take us to VMC. We arrive and go in through emergency. What are his injuries? a random doctor inquires. C3/4 paralysis, T4 burst, they say, bilateral wrist fractures. Nosy guy, I think. We go up the elevator to the second floor. Rehab Trauma is flustered. We weren’t expecting you until 3, they say. Denise worries aloud: they have a bed, don’t they? One of the ambulance workers says, hmmm, maybe they won’t have one until 3. No, Jason says, they have to have a free bed before we even pick the patient up on the other end, that’s the deal. They put us in Rm. 24. You can’t move him until the doctor comes, the nurse says, you have to wait until the doctor comes. Why? the MedFlight folks ask. We moved him from the Vegas hospital to the ambulance, from the ambulance to plane, from the plane to the ambulance, all of a sudden we don’t know what we’re doing? Sorry, says the nurse, that’s just the rule here. The doctor has to make sure he’s stable before you move him. You’ll need to wait for the doctor. So we’re all cooling our heels. Bob's eyes are wide open, he wonders what's going on. Dr. Rosaina doesn’t answer his page. Go get that guy from Emergency, someone jokes. The MedFlight folks are getting a little huffy, and the ambulance guys look uncomfortable. Rosaina is still a no-show. Tell him we have another flight, they say to the nurse, we need to sign off on this patient because we have to get back to the airport. Well, you folks are early, otherwise he would have been here waiting for you. Finally, Rosaina comes onto the ward. He talks with the MedFlight folks: Just so you’ll know, he says, I can’t ask you to help move him and I can’t let you help move him. I’ve been silent up to now but can’t help but throw in my two cents: who’s the suit keeps coming up with all the rules? Denise and Jason transfer all the paperwork to Rehab. They get ready to leave. Thank you so much, I say. They hand me a business card. You were wonderful, I say, and I hope to hell I never have to see you again. You’d be surprised how often we hear that, they say. 1:10p The admitting nurse makes a call, we got a new patient about 30 minutes ago, Lloyd… uh… (looking to the other nurse) …what’s his first name? It’s Lord, I say, not that they asked me. Lord. Robert. 1:15p The curtains are pulled around Bob’s bed. I kneel at the nurses’ desk and write in my notebook. Someone wheels a chair up beside me. Inside the room, they are conducting the initial assessment. I need to see how your sensation is. Feel it here…and then different here? Compare this…with what you feel here. Mouth “yes.” I’m going to move your arm a little bit. Do you feel me touching your hand here? Feel this…does it feel sharp to you? Sharp, dull or don’t know/can’t feel. Bob, mouth “sharp,” “ dull, ” or nothing. If you can’t feel it, say nothing. Feel something? Sharp, dull or can’t tell…sharp, dull or can’t tell. OK, that’s a good answer. Can you tell which part of your body it’s touching? Your knee? Your ankle? Your foot? It’s OK, we know it’s hard. Up here you feel sharp, right? What about back here? Sharp? Here? Hard to tell? Sharp, dull, hard to tell? That was, uh, T1 and T7. One more…sharp? You’re doing a great job, I know this is kind of tedious. Let’s go higher in the bottom of your leg here. Can you feel this? What side am I touching? Am I pushing left or pushing right? Dr. Waite (female voice): “You’re in Rehab Trauma of Valley Medical Center in San Jose. Dr. Rosaina (male voice): Try and relax, get some sleep, breathe well, and we’ll do the rest. Dr. Waite: You have a trach to help you breathe and a PEG, a tube that puts nutrients directly into your stomach. You are fitted into a Halo vest that supports your head and neck. Dr. Rosaina: Pain? You’re having pain? Where? Right elbow? Did that hurt you? Straighten it out like that, is that any better? The fixator forces your arm to torque a certain way, we’ll remind the nurses to try and keep your arm flat here. Dr. Waite: We’ll take good care of you—you’re in very good hands. Your nurses will help get you situated, and Dr. Rosaina and I will go off to start the mountains of paperwork that your arrival has created. (Laughing.) But don’t worry. We’ll keep you informed of everything that’s going on. Nurse: Do we take these staples out? No, that’s a graft site. Iliac crest or midline? Once the doctors have done their initial assessment, the nurses get to work. It is at this point that Drs. Rosaina and Waite introduce themselves to me. They give me a brief rundown of what to expect in the weeks to come. Bob has been admitted into the RTC, or the Rehab Trauma Center, on the second floor above the emergency room. As his condition and endurance improve, he’ll be moved into Rehab in another building. Dr. Rosaina has ordered a doppler of Bob’s legs. Before resuming the SCDs, he wants to make sure no clots have formed in the transport process. *** I need to get home. Having come to town by Lear jet (la-dee-dah), I am without a car. One of the nurses offers to take me as far as Los Altos when her shift ends; she comes back in a few minutes, apologizing, she’s just remembered an appointment that requires her to stay near the hospital after work. I call Yellow Cab and wait for them outside of Emergency. It is a $42 ride from San Jose to Palo Alto. The driver pulls away. I am back in front of my house. The white ash trees have dropped their load of crunchy tan leaves. They are everywhere. When I was last here in late October, it still felt like summer. I’ve been absent a full month; fall snuck in while I was gone. I do not have a house key. But my neighbor Tzvia has been collecting my mail and feeding our cat. I knock on her door. Her mother, visiting from Israel, opens the screen and gives me a big hug. She speaks little English. “I’m so sorry,” she says, and then talks to her grandchildren in Hebrew. Lior, Oded, I ask, do you know where your Mom keeps the key for my house? Lior brings me one to try. I’ll be back if it doesn’t fit the bolt, I say. I walk across the street. They watch me from their porch. The key works. I turn and wave, then step into the house. It is very cold and shiny clean. I switch on the heater—the warmth needs to come up through the glazed Spanish floor tiles, it will be several hours before we can feel its effect. The dining room table is covered—a card and houseplant, some cookies, a few packages, and my mail separated into orderly piles. I munch a biscotti and open up my mortgage statement. $89 late fee. Ouch. AT&T cell phone, $574. Ouch. I decide to stop. There are several other bills, certainly overdue. I’ll get to the rest of the mail later. Lizzie meows from the garage. She has been lonely. I head out to pet her, scooping her up. She relaxes into my arms, paws kneading, claws snagging the fabric of my jacket. I notice Bob-things spread about, some tools, an extra set of BMW tires, wrapped in white plastic. Some older computer equipment. Back inside, on the refrigerator, a picture of BL taken a few days before we moved from Seattle. Smiling. Holding barbeque tongs. Simone is fleeing the bottom corner of the shot, blonde ponytail, yellow floral sundress. I miss him. It rises in my throat and stings my eyes. It was a bad idea to come here alone. I rifle through the photo albums on the bookshelf, trying to find the one from our wedding. Shit. I can’t manage my finances and I can’t get my house warm and I can’t even find my fucking wedding pictures. It starts as just words but crescendos to a wail: you’re supposed to be here, why did I let you drive off to Vegas, I should have said no, what am I going to do, what am I going to do. I walk into our bedroom and throw myself on the mattress, flailing, screaming. It hurts my throat and I have mascara running into my eyes but I can’t calm down. I was going to wait for John and the kids but I can’t stand to be here any longer. I rinse off in the shower and find my car keys in the silverware drawer. The Sienna starts right up. As I head toward the freeway, the leaves scatter from the windshield, momentarily blocking my view. *** Traffic is terrible. I manage to get lost driving back to VMC. It is only 18 miles but it takes 90 minutes. I do not get to Bob’s room until close to 7. Visiting hours are over at 8. Perhaps I will stretch the rules later but tonight I need to get back to be with my kids. BL, I say, coming over to kiss his cheek, I’m sorry to be so late. You know how I am, I got lost coming here but I think I’ll be able to figure it out next time. I tell him that I heard from John; the trip from Vegas is taking a little longer than expected because of a few wrong turns. John and I are pretty silly, huh, I say, both of us getting lost. Of the three of us with new destinations today, you’re the only one who can follow directions. He smiles. His lips move. I can’t figure out what he’s saying. I put my ear to his mouth to listen for clicks or pops, something that will offer more clues. Nothing. He moves his lips some more and I say, I’m so sorry BL, I’m trying to understand but I suppose this is just one more another thing I’m lame at. Can you say it more slowly? I’ll watch really carefully. He excruciatingly forms each word. “ I love you.” Incredulous, I ask if that’s what he said. He grins and gives a tiny nod “yes.” Maybe a wife sees only what she wants to see, but that’s the first I’ve been able to understand from him. Lynne Trainor is the lucky winner of the Bob Speaks contest. I’m still sad from my time in the house, and you know, since he loves me and all, I confide how foolish it was for me to go back to Palo Alto alone, how I was flooded with the incredible injustice of it all, that the house was cold and I opened some bills and I know I’ll get used to it but it’s just so hard not having him with me…and I’m on the verge of tears, my voice quavering… And all of a sudden his eyes shut tight and he starts to cry, big silent wracking sobs. BL, BL, I say, putting his head in my hands, my lips to his ear, oh sweetie, sweetie, please don’t cry. I shouldn’t have told you those things. We’re doing fine, or at least we’ll get used to it and besides you’ll be home soon anyway. Don’t cry. I was wrong to trouble you like that. I’m so sorry I upset you. Look at me. Look at me. He opens his eyes. I know this seems hopeless, I say, I know you are worried about me and worried about the kids and worried about yourself. But you need to know, BL, when we were in Las Vegas I went and looked in the mine where you fell. I shone a flashlight all the way down. I saw the ledges you hit, and I thought of you laying down there broken, bleeding, in pain. And you know what, BL, I saw that place with my own eyes and it is amazing to me that you are still alive. I got you back. What a gift that is. And guys get injured like that and they die and they never get to be with their wife again or see their kids grow up. And you’re alive. I am so happy not to have lost you, it doesn’t matter how this ends up, I will gladly carry you around on my back for the rest of our lives if that’s what it takes to have you with me. So please don’t cry. Wait until you can talk, and we will cry together. I promise you. We will talk and cry and talk some more and cry and we will get through this. I promise. You’ve taken care of me for 18 years and I would be honored to take care of you for the next 18. After that, we can re-negotiate, OK? So I grab some Kleenex and dab his eyes. I get fresh tissue for my own. I move toward lighter topics. We both cheer up a bit. The nurses oust me for a procedure. I walk to the cafeteria but it closes at 6:30. I find the bathrooms and locate the payphones. I return to RTC and the curtains are still pulled. It is nearly 8 when I am allowed back in. BL, I say, visiting hours are almost over. Tonight I will leave on time but I bet I can stretch the boundaries more in the future. John just called, he and the kids are at the house. I need to go home to help them unpack, and then I have to take John to his hotel. His mouth forms words. I don’t understand. Say it again, BL, say it again slower. “Take me with you.” Is that what you said? He nods. You know I would! I say. That’s what I want, too. Soon, very soon. And guess what, the doctor says that maybe some nights they can get me a cot so I can stay later. He moves his lips again. “I want to be with you.” Me too. From jacque@oz.net Fri Nov 29 19:52:23 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Fri, 29 Nov 2002 11:52:23 -0800 (PST) Subject: [Bobwatch] The Bob Report 11/27 Message-ID: <3025.209.179.210.78.1038599543.squirrel@www.oz.net> Wednesday, November 27, 2002 11:30a I am completely ready to go out the door and drive to Bob. Damn, I gotta go find my dog first. I think I know where he is. And at $$ per day, I should take care of that first. BL’s high-priced accommodations are mandatory. The dog’s are not. These days I have to economize where I can. I drive to the kennel we usually use. I should have planned my little speech before I walk in. But I don’t. I know I’m coming across as a complete idiot, but I’m a little low on caring these days. Uh, I think my dog might be here? I’ve been out of town so I’m not sure, the people who were staying at my house might have brought him in. Under the name Lord, or Deerr-Lord, do you have a Harley here? Oh yes, she says, let me check….yes, Julie Lord brought him in on the 19th. Said there was some kind of accident? Stephanie, would you go get Harley? I pull out my Visa to pay for his stay. We don’t have his leash here, they say, one of our employees has been taking him home in the evenings--it’s with her. Harley drags Stephanie through the door and jumps up, front paws on the counter. He is very excited to see me. Is that Laurie he goes home with? I ask. Yes, it is, they say, surprised. That’s very kind, I say, she’s my brother-in-law’s ex-girlfriend. OH, the girl says, brows arched high, you’re related to Don. I can guess this isn’t the first time my bro’s been trashed-talked in this office. I even have proof: when we first moved to PA in June, I called to get kennel reservations for an upcoming family trip. “Laurie” answered the phone. I explained that we’d just moved from Seattle and that this place had been highly recommended. Lord? she asked. You just moved from Seattle? You have two kids, right, Grant and…uh…Kylie? Before I get a chance to marvel at her (slightly imperfect) psychic abilities, she fesses up—Don used to be her main squeeze. And although it would be blissfully easy to join Palo Alto Chapter of DL Anonymous (membership : 2), I fight the urge. Several months later, in Bob’s hospital room, I can’t resist the urge to tease Don about having met up with a former flame. “I’ve never talked to anyone who could make ‘eye candy’ and ‘asshole’ sound so natural together,” I say. “Impressive.” While driving Harley back to our house, I call Don to tell of my dog’s mixed fortune: brutal days of incarceration, nights curled up with a good-looking girl. “She’s a very kind-hearted person,” he says. “Did you ask for the eye candy asshole discount?” 1:50p Nurse Jane says the Doppler has revealed a blood clot in Bob’s right leg. They have started him on Lovenox (low molecular weight heparin) and will replace the SCD on the left leg only. 2:40p I am standing on his right side. Jane is on his left, preparing to suction. His mouth moves frantically. I can’t understand what you’re saying, I tell him, wait until Jane is done and I’ll ask her to translate. He closes his eyes in resignation and endures the procedure; once his coughing subsides, Jane and I change places and she watches his lips. He mouths three syllables. Slow down, Bob, say each word slowly. Again, the three syllables. Even the nurse doesn’t understand; I don’t feel quite so useless now. Can you spell it, Bob? She announces each letter from his lips: M-O-V-E-A-W-A-Y. Move away, she repeats, you want me to move away? He mouths “yes.” 2:45p Dhara, the speech therapist, comes in. She asks me a few questions: what does your husband do for a living? What is his normal rate of speech? Has he tried to communicate much? She then goes up to talk with Bob. My job is to make it easier for you to communicate with the staff and with your family. Can you tell me your name? Bob? What is your last name? I can’t get that. What is that? My…wife…is…Jacque. Good. Yes, I understood that. Your wife is Jacque. You need to speak about that slowly for people to understand you. Are you having trouble remembering things? Not yet? Well, don’t worry, if you’re not having trouble yet, you probably won’t. Do you wake up confused? Yes, sometimes? Can you tell me the date? What is the month? October. The year? 2002. Bob, we’ve gone into November, but you’re close. Where are you? Slower, please. Where are you? Are you in a hospital or in a hotel? Hospital. Good. Do you know where the hospital is? In Nevada or California? Rio? Reno? Go ahead, catch your breath. California or Nevada? California. Good. San Jose or Palo Alto? San Jose. Good. How long have you been here? Since when? She hangs a bright green 8 ½ x 11 chart on the bulletin board to his right: it has pictures: pillow, blanket, roll over, sleep, bed, light on, light off, hot, cold. The idea is that the nurse can point to one and he can mouth “yes” or “no.” I do not get the impression that any one of those essentials even hints at what Bob wants most to communicate right now. 3p BL has been staring up at the ceiling for over a day now; I figure a discussion of its appearance is fair game. This room is really ugly, I say, beige, beige and more beige—but I guess the color scheme shouldn’t really matter. The water stains on the ceiling, though, that’s just gross. I mean, they’re drop-in panels, for god’s sake, pop out the dirty ones and change them out. He stares straight where I’m pointing and starts mouthing words. Say it again, BL, and slower. This is so frustrating for me, I say, and it must be even worse for you not to be understood. I can’t believe how lame I am at this. The speech therapist was so skilled—yes, I know, her bread and butter. He mouths each word with exaggerated care. Take…me…out…through…there. You want me to take you out of here through the ceiling? I laugh. Is that what you said? He nods ‘yes.’ You’re kidding, right? Eyebrows up. BL, I say, if you really want to break out, I’ll just roll this bed out to the parking lot. I can tow you home behind the car. 4p A slight, silent man in blue scrubs comes in, dark hair, the beginnings of a receding hairline, wire-rimmed glasses with a darkish tint. He checks Bob’s pulse at the toe, ankle, and wrist, then pulls out a stethoscope to listen to lungs and heart. He mills around in the room for a while, completely ignoring me. I watch all of his moves intently. He still does not acknowledge I’m there. OK, this guy is off on the wrong foot with me. Plus he gives off this creepy angel of death kind of vibe. Mr. Lord, I’m Jeff, I’ll be your nurse tonight. He looks deeply into Bob’s eyes for a few minutes. Just say something, Bob, so I can get an idea of how you communicate. BL won’t talk. I speak up. Just a few minutes ago, I offer, he was talking with both me and the speech therapist. I think we wore him out. Jeff continues to blow me off. Maybe he thinks I’m trying to horn in on him and Bob. I’ve got to go take care of another patient for a few minutes, Mr. Lord, and then I’ll be back. He leaves the room. What was THAT all about? OK, OK, I know I’m prone to inflammatory first impressions-- so if he turns out to be a keeper don’t hold me to that angel of death thing. 6:45p Graham and I come back to the hospital after dinner. We enter the room and set down our things. Jeff jogs over and points to the green half-sheet taped to Bob’s door: CONTACT PRECAUTIONS Visitors: Report to the Nursing Station Before Entering God, I’m turning into such an drama junkie. This minor chastisement immediately kick-starts my adrenals: my shoulders and center back go tingly. This happened in two hours? I say, alarmed. Why the change? MRSA, he says, you’ll need to wear gown, gloves and a mask. MRSA? I repeat. How is that different from ORSA? What tests have you run that show this? He’s only been here one day, how can you know what type of staph it is if you haven’t had time to grow a culture? Jeff, AGAIN, ignores me. If I have learned nothing else during this experience, I have learned that rapid physical movement is the best cure for adrenaline poisoning. I literally kickbox my way into all the barrier clothing. And just when you thought I was the most counter-suggestive person alive, along comes my second-born. Graham does not take the news of the wardrobe requirement well. I’m not putting anything on, he declares. I won’t. You can’t go in and see Dad unless you do, I tell him. I don’t want to go in. OK by me, I say, but you’ll need to stay out here by the nurse’s desk. So I visit with BL, apologizing for my get-up, talking at him through a molded surgical mask. Graham sits on the floor outside Bob’s room and glowers. C’mon, Gray, I call out, just pretend it’s a Halloween costume. You get to be a surgeon. He’s not buying it. I talk to BL for a while, but he’s not doing so well, he’s sweaty and tired, and looks terrified about the fact that everyone who approaches him does so from behind an anti-microbial barrier. Once he closes his eyes, I set up my laptop. Typing is a little bizarre but the worst part is the way my latex-clad finger drags on the touchpad. Graham eventually acquiesces. I strip off my protective garb, wash my hands, and step outside the room to help him suit up. I put on fresh clothing. 8:45p The tableau in Rehab Trauma Center Rm. 24: The room, dimly lit. Bob asleep propped on his left side. My face illuminated by the glow of the computer screen. Doing make-up homework, 4th grade math worksheets, nine year old Graham Lord, #2 pencil in latex gloved hand, eyes peering over a surgical mask. From jacque@oz.net Sat Nov 30 03:10:44 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Fri, 29 Nov 2002 19:10:44 -0800 (PST) Subject: [Bobwatch] The Bob Report 11/28 Message-ID: <3024.209.86.4.93.1038625844.squirrel@www.oz.net> Thanksgiving Day: November 28, 2002 10:00a A sign outside Rehab Trauma Center (and taped up on every patient room door): 12p-8p Visiting Hours Strictly Enforced But here I am anyway. I stop outside Bob’s room and suit up; gown, latex gloves, mask. Maybe cuz I look like I know what I’m doing—no one gives me grief. Mamtesh is Bob’s nurse. She has just leaned over my shoulder to correct the spelling of her name. :-) He was just bathed, lotioned and turned, she reports, and given Vicodin to help with pain and to calm him down. Vicodin? Hmmm. And I was so fond of morphine. A quick Google informs me that Vicodin is comprised of: Hydrocodone bitartrate: suppresses the cough reflex Acetaminophen: relieves pain, reduces fever I’m no genius here, but wasn’t a weak cough reflex one of the reasons he was trached in the first place? Any particular reason we’re trying to suppress it further? Mamtesh leaves and I go to Bob’s right side. He is agitated and speaking manically. I may be a dolt with words, but the mood is clear. One word at a time, I say. But even I know that won’t help. It is so frustrating for me not to understand. My anxiety builds, a few minutes of staring at his lips with no comprehension brings me near tears. I’m going to go get a drink of water, I tell him, let me go check my email. I’m not thirsty and I would never pick time online over a chance to talk with my injured husband. I just need a good excuse to back away from the bed; I need a few minutes to regain my composure. 10:20a Diana comes in, introducing herself as the assistant nurse manager. If you have any complaints, or anything good to say, my office is right over there. (She smiles and points.) Right now, she is changing Bob’s IV drip—they’re switching him from saline/potassium to just saline. 10:45a They come to take an x-ray of Bob’s chest. I take off gloves, gown, mask, wash hands, leave room. I’m gonna explode if I have to keep this up. Even on a good day, I have little patience for elongated rituals. At home I multitask—keeps me from jumping out of my skin. Put on a shirt, brush my teeth. Put on pants, blow dry my bangs. Put on socks, do my mascara. Put on shoes, check the dog’s food and water levels. Switch out all this clothing every time I go to the bathroom? Leave the ward to use the phone? Get kicked out for x-rays or other procedures? This is re-goddamn-diculous. Once again, adrenaline rears its irritable head. I address Diana at the desk. I need to know more about these new germ precautions, I say. Why weren’t we doing this drill in Las Vegas? Is he suffering from something more virulent here? How do I get to read Bob’s chart? Diana gives me an information release form to sign--she will fax it to medical records. It’s a holiday weekend, though, so no action can be taken until Monday. Once OK’d, I will be able to read the chart; but the procedure seems funky. They will take it down to medical records where I can pay to have the desired pages photocopied. Or at least that’s what I think she said. Do you want me to page the doctor? Diana asks. We want you to be happy. Uh….do I LOOK happy? 12:05p Diana calls me into her office. Uh-oh, I’m gonna get spanked for being bitchy about the chart. You looked so upset out there, she says, and I just wanted to put my arms around you and give you a big hug. But you don’t know me yet so if you have a few minutes let me introduce myself. She goes on to tell me her role on the floor, and her connection to the life that I’ll have from here on out: her husband is paraplegic, and together they foster a 15 y.o. quadriplegic boy. So I know what you’re facing, she tells me. I see that terrified look in your eyes and I know I don’t have to tell you what a rough road it is ahead. You’re strong, though, I can see that, and I know you’re going to be OK. Turns out that between our “I wanna read the chart” conversation and now, she’s gone through Bob’s reports and has a comprehensive picture of his condition. Her own husband Brian was injured 20 years ago, also in a fall down a shaft—an elevator, not a mine. He’d been crushed between the wall and the elevator when it was moving down, and then had suffered a fall down the shaft to land on top of the elevator car. His fractures were not as extensive as Bob’s, although he too had a thoracic vertebrae burst fracture and broken ribs. His internal injuries were worse, though, but included the bilateral pneumothorax difficulties Bob had.. She was not married to Brian at the time he was hurt; she was a nurse on the trauma ward where he was brought for treatment. She was in the room doing a procedure when Brian’s then-girlfriend said, “I just can’t sign up for all this,” and walked out of his life forever. It is at this point I am struck by a twisted notion of girl talk. “Oh, really? I met my husband at work, too.” I somehow manage to keep that bit of gallows wit to myself. She goes on: and we’re tough with the patients and you need to be tough with Bob because it’s a very hard world out there for paras and quads—as one very small example, it happens at least once a week that a waiter will ask me for Brian’s order, as if he’s deaf or mute simply because by virtue of being in a wheelchair. So please understand, she says, if we seem harsh here, or have more rules, or do things in a way that is different from the Nevada hospital—we know what we’re doing . Spinal cord injuries and rehab are our specialty. We are exactly the place where your husband needs to be. We will do everything we can to keep you informed and comfortable, but you need to trust that we’re doing the right thing. Would you like the doctor to come up after her rounds? she asks. I’ll be happy to get her if you have questions. Maybe you can give me a few answers, I say, and I won’t need to keep the doc from her turkey dinner. Is the MRSA (methicillin resistant staph aureus) that same as ORSA (oxicillin resistant staph aureus)? Yes, she says, it is. Why wasn’t UMC as stringent with the contact precautions? I ask. She explains that they are VERY CAREFUL with MRSA in Rehab Trauma, many of their patients are trached or otherwise compromised and it poses a very real risk to everyone on the floor. How about the Vicodin? I ask. Why are we giving Bob a painkiller with a cough suppressant in it? Vicodin produces less of a mental fog than morphine, she says. As patients improve and get closer to rehab, they need the clarity. For injuries of this sort, it is the best overall choice for pain relief. The cough suppressant characteristics aren’t that strong, she says. Anything else I can do to set you at ease? she asks. No, I say, you’ve given me a lot to think about. I appreciate your taking the time to talk with me. Well, she says, are you hungry? I brought breakfast as a thank you for the staff that has to work today: strata, Danish, bagels, orange juice. I’ve wanted to offer you breakfast ever since you got here. But I thought you’d be more open to it if we got to know each other first? Thank you very much, I say gratefully. I fix myself a plate and eat at the nurse’s station. It is delicious. 3:00p I arrive home to find a white box on my front porch--a complete holiday dinner from Mollie Stone’s Market in Palo Alto. Some very generous local folks are looking after us; this meal was arranged well in advance. The contents are fascinating---mashed potatoes, gravy, glazed butternut squash, cranberry sauce---all stacked in labeled plastic pouches. A sealed foil pan contains the stuffing. A clear plastic bag holds two layers of airy dinner rolls. The piece de resistance, obviously—Monsieur Le Bird. Fully cooked, with a lovely brown skin. Shrink-wrapped in several layers of the most heavy-gauge plastic imaginable. I cannot pierce it with a knife…and these are good knives…Henckels! (Wedding gift, ’91, Aunt Prudy & Uncle Bill. I worship them every time I cook.) Scissors work. I open each package. Turkey is cooked at 350F for two hours. Potatoes and gravy are warmed on the stove. Rolls and squash are heated in the oven. Cranberry sauce poured into a bowl. Yeah, we could have thrown together a salad. Didn’t do it. What a spread. It wasn’t homemade, but it was still a most excellent meal. And just when I was taking things out of the oven… 5:55p Charles, Lisa, Geneva, Sienna….and SIMONE come pulling into the driveway. Simone runs up to the front door. Mama! Mama! she shouts. I kneel down and she leaps into my arms. Her head lightly smacks my jaw…doesn’t even hurt. We hug for a while, then she runs to her suitcase to get her doll. Mama, did you miss Monica, too? 7:30p Charles and I go to the hospital after dinner. Rick, a respiratory therapist, is about to go in. He’s there to give Bob a breathing treatment. Albuterol? I ask. Not this time, he says. Your husband’s heart rate is in the mid 130s. We’ve been instructed to use plain saline if his heart rate is over 135. Albuterol makes some people tachy. So he sets to work.. It looks exhausting for Bob, first the treatment and then a spin on the “coughalator.” Charles and I stand back for a while until he settles down. I ask Rick about the purpose of the treatment: Albuterol helps relax the smooth muscle inside the lungs; better to remove and clear secretions. But plain saline helps, too--since Bob isn’t breathing through the moist upper part of the respiratory tract, they need to humidify occasionally. How’s the lip reading going, he asked me. Not too good, I say. I’m really looking forward to him getting a fenestrated trach in a few days. Oh, I don’t think you should expect that anytime soon, he says. Your husband has an amazing amount of secretions at this time. There will need to be a big improvement there before they can put in a fenestrated trach. Oh. Sigh. 8:25p Charles asks, Bob is it OK if I talk to you? Bob mouths, No, Charles, I can’t now….Doctor. Now. Doctor Now. Doctor Now. Is that what you’re saying, Bob? Charles asks. Doctor now? Bob nods yes. I peel off the robe and gloves, snap off the mask, wash my hands and run out to find Jeff. Bob keeps saying “Doctor. Now. Doctor. Now. Would you please come check on him? Jeff comes in and asks Bob is he’s having trouble breathing. Bob mouths “yes.” Jeff suctions him and Bob calms down right away. “Was that the problem?” Charles asks. Yes, Bob nods. That was the problem. 10:45p Simone is in her nightgown, laying in my bed, waiting for me, reading books, playing with Monica. I cannot stop looking at her, her tiny upturned nose, her shining, lizard-spaced eyes. Her voice is higher than I remember, and her choice of words is a bit more…worldly? Has she really changed that much in a month? Or am I guilty of infantilizing her in my mind? I kneel down on the mattress next to her, staring at her wispy blonde bangs—they skim the top of her brows. Have you had a haircut recently? I ask. Yes, silly, she says, remember when Dad took me to Supercuts? I am overwhelmed by love for her. I missed you so much when I was in Nevada, I say. I missed you too, she says, and I still miss Dad. I will take you to see your Dad soon, I say. You know that he is still very badly hurt, don’t you? It might be a long time before he comes home from the hospital. She nods. And when Daddy comes home, I say, he will be a little different—his legs won’t work any more so he’ll have to ride in a wheelchair. She nods again. I go in the bathroom to brush my teeth. Simone calls out from the bed: Daddy has cast-es on them. On what? I ask. His legs. No, I say, his legs aren’t hurt. His arms have casts, though. She pauses. So his legs are still attach-ed? Yes, I laugh, they are still attached. But they don’t work because his back is broken. His brain tries to send signals to his legs, but the message can’t get through. Another pause. Mom, she says, remember when your back hurts and I reach things for you that are down lower? Of course I remember, I say, you’re such a big help to me. Then I’ll help Dad with low things, too. But if they give him a very good medicine his legs will work again.