From jacque@oz.net Mon Dec 2 08:33:00 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Mon, 2 Dec 2002 00:33:00 -0800 (PST) Subject: [Bobwatch] The Bob Report 11/29 Message-ID: <16934.66.166.17.192.1038817980.squirrel@www.oz.net> Friday, November 29, 2002 I arrive in the morning to find Bob in the care of two nurses: Mamtesh and Diana. They wash, do pin care, change his linens and turn him. They unwrap and un-splint his arms to disinfect the external hardware; once finished, new ace bandages are rolled into place. The curtain is pulled for privacy; not from me, so much, but from the outside hall. I would normally be sitting inside the curtain boundary; today, however, yet another electrical outlet ceases to function in Bob’s room. To use my computer, I am banished to a spot near the door, between the sharps disposal box and the bin marked ‘soiled linen.’ I strain to see through a gap in the curtains. Bob looks calm, alert; he is talking. Surely he knows no one is trying to understand him. The nurses are talking to each other; their eyes diverted away from Bob’s face, focusing on his less conversational body parts. But still his lips move. Does this qualify as talking to himself? I have to imagine that being able to form words, even unheard ones, is a relief after weeks of intubation. I can only hope it helps him process what is happening to and around him. *** Love in the Time before Answering Machines I work a four-day work week at the City of LA, M-Th 7a-5:45p. Along with the traditional yearly schedule of paid days off, each employee is gifted one additional floating holiday. This can be taken for religious observation or for us hell-bound types, a worldlier occasion. So far, 24 years of lobbying to have the day of my birth declared a national holiday have proven fruitless. To the rescue, my cushy government job provides me with a way to sleep in on my big #25. *** Birthdays Male vs. Female View Male: Millions of Joes born the same day as me, no big deal--with any luck we’ll all get some tonight! Female: The day is mine alone. Celebrate the miracle of my birth. O worship me, how can you not? Venerate the very slug trails upon which I tread! *** Mamtesh says, Bob, we’re going to turn you and clean your back, and then put you on your left side, OK? *** Tuesday, October 29, 1985. I sleep in. Bob has a big CS project due that morning—he can’t skip the class where he needs to turn it in. No problem, I say, call me after that and we’ll hook up. I wake up around 10, the sun is shining, and it’s my birthday! I shower with the door open so I can hear the phone. Hmmm. 11a. Did he forget? I should call him. No, I’m not going to call him. He said he’d call me when he was done. I’ll wait for him to call me. I’ll just run down to the doughnut place and get a few…oh no, but what if he calls while I’m out? *** Promises to Call Male vs. Female view Male: I said I’d call you, and I WILL call you…sometime. Female: You couldn’t call because a dog bit off your fingers? Really. How big a dog exactly? How many fingers? *** Nurse Mamtesh: We’re going to wash your hair, OK Bob? Nurse Diana: Bob, do you need anything? Open your eyes. You have to talk more slowly so we can read your lips. You comfortable? We just gave you two Vicodin. How many fingers do you see? Open your eyes. How many fingers? *** The age difference thing pops up ugly in my mind. He’s just a kid, I think. Boys will be boys, I think. Never send a boy to do a man’s job, I think. And here’s to you, Mrs. Robinson, I think. Koo koo ka choo. But then I shift the blame to myself: how silly to wait by the phone. He’s just a kid; you should have made other plans. A CS project? A CS PROJECT? I’ve have plenty of birthdays ruined by my own undergraduate deadlines—I’m getting too old to let someone else’s undergraduate deadlines ruin them, too. *** I step outside the hospital to call my house. Cell phone use is not allowed in the ward; all phones must be switched off. Inside the hospital, reception is poor. I have to walk most of the way to the parking lot before I get decent coverage. *** In my apartment, the phone finally rings. It is after 4p. I am so flooded with disappointment by this time that I know I’m not capable of being civilized. I answer the phone anyway. Happy Birthday, J-L! Bob says. I’m silent. You OK? Been having a good day so far? More silence. I’ve got my stock market class in a few hours, he says, do you want to come over and do something before that? I pause before speaking, wanting to choose my words carefully. Oh Bob, you puny man-child, how could you possibly have known that my ideal birthday would involve spending hours in rush hour traffic for the privilege of sitting in your ratty little dorm room for the evening. Please may I may I may I can I can I can I please? OK, so I don’t say that. It’s kind of late in the day, I say, and you’ve still got another class. I don’t want to sit in a traffic jam. I was expecting to hear from you earlier, guess I didn’t have my facts straight. Look, it’s my fault for being dumb enough to spend my birthday waiting by the phone. Let’s just get together over the weekend, OK? I’ll see you then. Look, he says, I’m sorry. We finished the project really late last night. We pushed it under the prof’s office door just as it was getting light and then I went to bed. I woke up for the first time right before I called you. I’m sorry, I messed up. Please don’t be mad. I’m really sorry. C’mon, please come over? Please? Look, it’s OK, I say. I’m not mad. (I’m a terrible liar.) You have to come over, he says, I have a surprise for you. Just see the surprise and if you’re still mad, you can go home and never come back, OK? Please come over? Please? A surprise? I’m a pushover. I drive to Pasadena blinking back tears. *** Elizabeth from Physical Therapy comes. She has a lilting Eastern European accent. She wipes Bob’s eyes and suctions his mouth. Do you know it was Thanksgiving yesterday, Bob? Lots of turkey and gravy in somebody’s tummy. How are you doing? Trying to get better, that’s good. She picks up his arms one at a time, rotating the shoulder joints. Your wife says you live in Palo Alto but are from Seattle. You’re from Seattle? I’ve never been to Seattle. I used to live in Palo Alto but it got too yuppie. A bit later, Jeff and several other nurses turn Bob to his other side. After they leave, I go to Bob’s right to talk with him. The T-piece, which carries the oxygen, lays on his left, unattached to the trach. Hey BL, I say, you’re not hooked up. You doing OK? Wow. Should I put it back on? No, wait; I don’t know what I’m doing. I’m all dolled up in my steri-wear, hmmm, I’d have to strip it off and wash my hands before I could leave to get your nurse. Ah, out in the hall, I see the respiratory guy. He’s putting on the funny clothes so I know you’re next on his list. But you’re doing great; your oxygen number is still at 100. Are you struggling? A tiny shake “no.” Rick, he of the mellifluous voice, is back for another go. I’m going to give you a breathing treatment, Mr. Lord, and up next, the Brandenburg Concertos by Glenn Gould. Oh? What’s this doing off? he asks, alarmed. I think Jeff or one of the other nurses removed it when they turned him and forgot to replace it. It’s only been two minutes or so, I say, I saw you coming plus I was monitoring his oxygen sats so I wasn’t worried. Hmmm, says Rick, looks like he did just fine on his own. That’s a good piece of news but let’s hook it back up right away. Did you know that Jeff here (motioning to the angel of death) dates a C4 who got herself off the vent, looks like your husband might be able to do the same thing. Well. So the assistant nurse manager is married to a para. And this nurse guy is sweet on a quad. Am I behind the times on this devotee idea? Is there some cult here, a natural gravitation some people feel toward the disabled? I've never before been concerned that someone would want to steal my husband—should I worry now about getting a LoJack on his wheelchair? Just a thought. Rick is able to use the Albuterol tonight; Bob’s heart rate is in an acceptable range. But I notice our even talking about it brings it up just a notch. *** I walk into the Blacker courtyard. Bob is deep in conference with two other guys. I walk past the group and let myself into his room. In a few minutes, he comes to find me there. So let’s go, he says. Go where? I ask. You have your stock market class. It’s all taken care of, he says. Let me buy you a birthday dinner. I do my best to stop sulking. We drive to the Peppermill in Pasadena. I order a petite sirloin, medium rare. Bob gets the filet mignon. After the waiter leaves, Bob reaches into his jacket pocket and hands me a small package. It is wrapped in brown paper and decorated with colored adhesive stars. It is labeled: Caution: Flux Capacitor Contained Within. So, I say, what’s this mean? You don’t remember? he asks, disappointed. Open it up. You’ll see. I carefully remove the paper to reveal a small, hinged jewelry box. *** Small hinged jewelry boxes Male vs. Female view Male: Get over yourself. It’s just a small, hinged jewelry box. Female: A SMALL HINGED JEWELRY BOX???!#!!?? *** Inside, pierced earrings: each a single pearl nucleus orbited by gold, ending in a small dust tail of two diamond chips. I looked at quite a few pairs but liked those ones best, he says. They’re bee-boppy, just like you. They’re absolutely beautiful, I say. You shouldn’t have. Of course I should have, he says, it’s your 25th birthday. Bite the pearls--if they’re gritty you know they’re real. *** From Back to the Future, 1985: Doc: According to the flyer, at 10:04 pm lightning will strike the clock tower sending one point twenty-one gigawatts into the flux-capacitor, sending you back to 1985. Alright now, watch this. You wind up the car and release it, I'll simulate the lightening. Ready, set, release. Huhh. Marty: You instill me with a lot of confidence, Doc. From jacque@oz.net Wed Dec 4 10:43:41 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Wed, 4 Dec 2002 02:43:41 -0800 (PST) Subject: [Bobwatch] The Bob Report 11/30 Message-ID: <3119.209.179.250.110.1038998621.squirrel@www.oz.net> Saturday, November 30, 2002 9:55a Drs. Rosania and Wan are suiting up outside Bob’s room. Looks like they’re going to come in and examine him. They’re chatting with the nurses, generally shooting the shit and taking their sweet time. But at least that gives me ample opportunity to fire up Word. Rosania: We came by to see you, see how you’re doing? Are you tired? (I don’t know how much I’m going to move him.) Bob, I need to take a look at your skin. Dr. Rosania steps over to talk with me: do I understand the reason for the germ precautions? I tell him I do. He returns to Bob. I’m going to move you over just a little bit. (He’s actually in very good shape…mumble mumble mumble. What’s this? The trach collar? ) Rosania tells me not to be concerned if they start doing some cognitive tests on Bob. When someone hits their head that hard, it’s prudent to check for brain damage. We’re kind of worried; he seems a little out of it, he says. I give him my observations: if Bob is feverish, or tired, or perhaps feeling despondent, he is all but unreachable. But on good days, he’s very sharp. Mouths jokes, understands the nuances of conversation. On the day after the accident, I tell him, he was telling me which people to call, giving me banking instructions, etc. Of course, I don’t know what problems the cervical swelling and respiratory failure in the intervening time could have caused…but… Rosania says he’s going to ask respiratory to redo the trach sutures, in his opinion they are too tight. Also, in a few days, he will take out the staples on the iliac graft site. I ask why they have not yet resumed antibiotic treatment for the staph. Rosania says they are waiting for the culture to show what medicines it is resistant to. I mentioned he’d had Gentamicin, Rifampim and Vancomycin in Nevada. Jane asks: Did you spend the night? No, I say, I came in around 9. Who is taking care of the baby? My sister is in from Portland. Quiet holiday weekend. I leave the room occasionally for phone calls and food. Diana and Mamtesh come in to turn Bob, bringing their pixie dust of Vicodin, then they suction Bob. Diana reads Bob’s lips during the treatment with the coughalator: STOP. STOP. STOP. STOP. Connie from Respiratory comes to give another breathing treatment, tipping the head of Bob’s bed lower than his feet. Mother Nature can do a better job with gravity than we can with a suction catheter, she says. I know this doesn’t feel good, Bob, but it sure feels better than pneumonia, believe me. Good, she says, some of that stuff is starting to move. I am so tired. I go home to sleep. Lisa has taken the kids to see Treasure Planet—but calls Charles to pick up Simone early because she is showing signs of a bladder infection. Charles buys her cranberry juice from the store on the ride home. Charles then comes solo to the hospital. He’s read the Bobwatch long enough to fully understand his duties as a reporter. From his notes: Bob says ‘hi’ and then wants to rest. Beth (nurse) gives me phone # for speech therapy dept, they will be open Mon—can order prism glasses so Bob can watch TV. They have a VCR available. Kate, another nurse, says that Bob is under a lot of medication and will be drowsy a lot, wouldn’t be able to watch anything, just fall asleep. Respiratory does a lung expanding procedure, then suctions. Seem to be less coughing than Thursday. The therapist says there isn’t much in the way of secretions—she lives in Las Vegas, by the way, and works in San Jose—pay is better here. She says that Bob can speak if the trach is covered but he needs to stay on oxygen now. A man comes in and measures both the length and circumference of Bob’s legs in various places, unceremoniously marking with a red pen. I ask what the measurements are for, a quiet ugh, I ask again, another ugh. Does he speak English? Thanks, Charles. 7p, Lisa and I arrive with all the kids. They can choose whether they want to see Bob or not. We have prepped them at home for what they’ll see: a few digital pictures taken of Bob in his hospital bed in Las Vegas. Prior to leaving the house, I explain the Halo and vest, the trach, the IVs, external hardware and bandages on the wrists, the breathing equipment, the sequential compression devices and bunny boots that keep his feet at right angles to his legs. We check with Charles before we come –it is his idea to ask the nurse for a thin sheet to cover Bob. During his five weeks of hospitalization, Bob’s legs have become noticeably bony. Charles is worried the combination of weight loss and muscle atrophy will be too disturbing for the kids to see. Sienna (6) comes in first. I help her suit up. Everything is much too big. Her Dad Charles mimes in his get-up through the window. She is quite a good sport about the whole thing. When she enters the room, her Dad lifts her up so she can see Bob’s face. Bob opens his eyes. “Say, ‘Hi, Sienna,’” I tell him. “Hi, Sienna,” he mouths. Her eyes take it all in. I don’t really know what else to do, so I explain all the equipment. This pump feeds him the green goo, I say, tracing the tube from the Kangaroo pouch to where it disappears beneath the bottom of his Halo vest. I pull back the sheet to show his feet—see this E.T. light on his toe? That measures how much oxygen he has in his blood. Charles and Sienna take off their gowns, wash their hands and go out to the waiting area. I am expecting him to return with Simone, but Geneva comes instead. Simone says she wants to see her Daddy, but not until she doesn’t have to wear a mask. I think she's thinking of Graham's grim reaper mask from Halloween. Carly is not fearful of masks (any more) but still hasn't seen Bob since Vegas...her choice. I don't want to force her. Bob is grogged out on Vicodin—they tell me they’ve upped his dosage; no reason for him not to sleep through the holiday weekend. Even so, he is able to recognize the kids. Now, without my prompting, he mouths Hi Geneva, Hi Graham. There is much switching in and out of gowns, gloves and masks, signing in of the kids—who all are asked about recent exposures to colds, chicken pox, etc.. One adult staying in the room with Bob, another shuttling back and forth from the waiting area. It is quite the production. We say goodnight to Bob and drive home in two cars. Back at the house, Charles and I sit down to get me up to speed on Bob's bill-paying scheme on Quicken. I now know just enough to be dangerous. From jacque@oz.net Wed Dec 4 10:47:50 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Wed, 4 Dec 2002 02:47:50 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/1 Message-ID: <3122.209.179.250.110.1038998870.squirrel@www.oz.net> Sunday December 1, 2002 Charles, Lisa, Geneva, Sienna and Simone head to Santa Cruz to see the monarch butterflies at Natural Bridges State Park. Graham and I go to the hospital to do homework and hang with BL. It is actually a reasonable study environment, a hospital room. Few distractions, especially with Bob so sedated. The nurses stop to compliment Graham’s industriousness, asking him about his grade level and his homework, saying how much he looks like his Dad. Diana looks at my shaggy son: would I like her to cut his hair? Graham says no, my mom is going to take me to a barber this afternoon. I am? Oh yeah, I am. I ask about the fluorescent Foley. Rifampin? I ask. Yes, says Diana, how did you know? Rifampin at 9 last night, Bactrim at 9 this morning. Gray works solid from 12-1, and rewards himself with 20 minutes of GameBoy. We then hurry to the cafeteria as not to miss lunch. Isn’t it open all the time like in Las Vegas? Graham asks. Everything is open all the time in Las Vegas, I say, but thank God we’re not in Vegas anymore. They might be closed---the hours aren’t as extensive as UMC’s. What slackers, Graham says, so the Valley Medical Center food service is thusly dubbed: The Slackerteria. We arrive just in time: I get salad, Graham has hot chocolate and Cheetos. See? Not that different from Vegas. In the evening, both Charles and Lisa come to the hospital to say goodbye to Bob. The kids want to come in again, but none of the adults has the energy for all the costume changes. From jacque@oz.net Wed Dec 4 10:58:28 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Wed, 4 Dec 2002 02:58:28 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/2 Message-ID: <3125.209.179.250.110.1038999508.squirrel@www.oz.net> Monday, December 2, 2002 Charles and Lisa get up early for their 7:30 flight. They will leave a car at the airport for our Seattle neighbor Gina to drive when she arrives in San Jose tomorrow. They come in the bedroom at 5:40 to say goodbye; Simone and I get up to give hugs and say thank you. We go back to sleep. I must have set the wrong button the alarm clock because I wake at 7:15 instead of 6:45. No problem. Both olderkids get up quickly. School is probably looking pretty good as compared with our monastic Las Vegas life. 7:25, the phone rings. I refuse to answer it on principle. They leave a message. I go outside a few minutes early to see if the kids’ bike tires need any air. One of Carly’s is flat, she’s had a slow leak since we came to California. Graham’s are fine. Take my bike, Miss Q, I say. I won’t be using it today. Why don’t you plan on riding it for a while. Yours is too small for you, anyway. Either you or I are going to have to get a new bike soon. Or maybe…come to think of it…maybe I can have Dad’s adjusted to fit me. Both kids leave for school. Simone sleeps undisturbed. I putter around the house; strip linens, start laundry, fold sleeping bags, empty dishwasher. Simone continues to sleep. Move wet laundry to drier, pay bills, water plants, vacuum carpets. Simone? Not awake yet. Fold laundry, check email, unpack boxes. And then I start thinking….hmmm. I’m kinda tired. Maybe I’ll just put feet up and close my eyes… Simone comes trotting out of bed. Good morning, Mama! We have breakfast. She has a bath. I follow with a shower. We are both scrubbed and good-smelling and I say brightly, Nu-nu, let’s go to the hospital to see Daddy. I TOLD you, Mom, she says sternly, I don’t want to see Daddy until I don’t have to wear a mask. Remember the blue mask we brought home for you? I ask. It’s not scary. It makes a good hat, she says, but I don’t want to wear it on my face. I am disappointed. Monday, holiday weekend over. Maybe now we’ll see more action. Maybe now I can start to view the chart. Maybe now I can … But Simone needs a Mom at least as much as Bob needs an advocate. I try to relax into being with her. We read stories. We sculpt with playdough. We make cinnamon toast and have a tea party with all her dolls. We make a trip to the drugstore, she on her bike and me running behind. We do all the mother-daughter things we did before Bob’s accident; the ritual is soothing but I worry about Bob unable to speak for himself at the hospital. It’s like withdrawal, really, I have that much self-knowledge, at least. We bring Oreos home from the drugstore. Graham and Simone eat some with milk when he gets home from school. How was your first day back? I ask. Great, he says, you can tell from how much I’m smiling, right? Hey Mom, I got Zoo Tycoon. Remember, Julie ordered it for me from Scholastic. Can I do my homework and my two chores and then play on the computer? Chores are on the house today, sonny boy, I say. Take the day off. But do your homework first. Cool! he says, and then disappears to his room with his backpack. Carly gets home from school close to 5p—with my permission, she has stayed late to catch up on homework. A circuit breaker blows, rendering the refrigerator, microwave and toaster oven without power. I grab a flashlight (don’t leave home without it) and walk around the outside of the house in the dark. I finally find the panel. Look, Ma, that EE degree is finally paying off. After dinner, Simone stands by her anti-mask position and Graham wants to continue designing his zoo. Carly begs off---homework, ya know. I put her in charge. I drive in rush hour traffic to get to the hospital. Maybe it’s the anxiety of the long separation, or maybe it’s just the right time for it, but I start crying in the car on the drive over. I keep crying parked in the lot at VMC. I wait long enough to think I’ve cried it all out, but then going up the elevator I start to cry again. And I cry in the 2nd floor bathroom as I am checking to see if I still have a contact lens in. And I cry all the way down the hall to Rehab Trauma. I cry as I’m suiting up. And I cry in BL's room. I try not to. He cries a little, too. As before, I feel terrible for burdening him, so I switch to lighter topics. He keeps interrupting me--yes, even voiceless, Bob can derail a conversation. He is trying very hard to be understood, I can’t figure it out, he says the same things over and over again in big patronizing chomping bites but I still have shit for brains. I start crying all over again and so does he. I keep trying to say it’s OK, BL, but this just makes him angry. This is all so clearly not OK. I try to talk about other things but he keeps cutting me off, I can’t tell if he doesn’t want me to upset myself further or if he just doesn’t want to hear it. I retire to the chair for a few minutes and cry out of his eyesight. From that distance, I watch him continue to talk. His eyes are wide open, he looks mad as hell. I have no idea what I did. Maybe this rage isn’t about me at all, how about that. I wait a few minutes, then try to approach him again. He won’t acknowledge me and keeps saying the same thing over and over again. I still can’t get it. What the hell is wrong with me. He looks so angry. I’m so sorry, BL, I’m just not much good to you right now, I say, I think I should probably go. You do that, he mouths. Funny, I got THAT. I don’t have a mom. That makes me cry. I don’t have a dad. That makes me cry. And for now, at least, I don't even have a husband. That's the worst part of all. I miss hearing him speak. I miss his humor, his predictable intolerance, his overall male point of view. I can pay for someone to clean the gutters, I can even hire out for sex if it comes to that—but who can I find to Bobtalk with me? So I leave and drive home, crying all the way, pulling up into the driveway and crying some more. Sitting in the car with the stereo on, crying and crying and since I know I’m not going to be able to stop I go in the front door and do my best to be presentable for my children. Three children who are hurting as badly as I am, and looking to me to handle this better. I have never felt so alone in my entire life. From paul@interwoven.com Wed Dec 4 18:33:24 2002 From: paul@interwoven.com (Paul Summers) Date: Wed, 4 Dec 2002 10:33:24 -0800 Subject: [Bobwatch] Buoyant thoughts for Jacque Message-ID: Hi, everyone. I haven't posted before, and most of you probably don't know me, except for the other Interwoven employees. But this actually illustrates the point I'll try to make. My entire relationship with Bob is based on being in 2 design review meetings with him, so I doubt that he even recalls my face, if not my name. I was debating with myself about sending this post until I saw Jacque's last post about feeling very alone and isolated. Jacque - you're neither, if you count the number of folks on this list who are thinking about you, Bob, and the kids. For me, it's never far from my mind. I have had a couple of sanity-threatening experiences in my life, the memories of which are connecting very strongly with this event. So, I'd like to share something that happened to me last week with Jacque, FWIW. Jacque - We've never met, so I'm going out on a limb here. I hope that this thought gives you some warmth and hope. At 00:04:56 -0700 (MST ) Thu, 21 Nov 2002, jacque@oz.net wrote: >...my cell phone rings. It is Ellen. Bob is unhappy ... I asked if he misses [me] and he blinked yes. ...We drive back to the hospital and go up to Bob's room. My return calms him a bit.. Driving home from IWOV a few nights ago, I was listening to a CD in the player. About halfway through the first verse of the first song, my brain locked onto the lyrics, and connected with a scared wife who is trying to make sense out of reality. For Jacque: "Something In the Way She Moves" James Taylor There's something in the way she moves, Or looks my way, or calls my name, That seems to leave this troubled world behind. And if I'm feeling down and blue, Or troubled by some foolish game, She always seems to make me change my mind. Chorus: And I feel fine anytime she's around me now, She's around me now Just about all the time And if I'm well you can tell she's been with me now, She's been with me now quite a long, long time And I feel fine. It isn't what she's got to say But how she thinks and where she's been To me, the words are nice, the way they sound I like to hear them best that way It doesn't much matter what they mean If she says them mostly just to calm me down Every now and then the things I lean on lose their meaning And I find myself careening Into places where I should not let me go. She has the power to go where no one else can find me And to silently remind me Of the happiness and the good times that I know, got to know. From jacque@oz.net Thu Dec 5 19:26:49 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Thu, 5 Dec 2002 11:26:49 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/3 Message-ID: <19474.66.166.17.192.1039116409.squirrel@www.oz.net> Tuesday, December 03, 2002 9:00a Simone makes her triumphant return to Grace Lutheran preschool. The teachers, who were not sure whether she would be back, are very pleased to see her. December nametags all laid out in a row, green felt Christmas trees with names in white puffy pen. Simone, Miss November, the lone vestigial turkey. Teachers Karen and Ursula say they’ll have a new nametag for her on Thursday. So I will gladly pay my $150/month and volunteer on whatever schedule they give me, My baby girl now goes to school and likes it that way. Although I’ve only been in Palo Alto five months (four if you subtract out my Lost Vegas period), I manage to recognize two mother/child combinations: Debbie/Tricia from the YMCA, and Jennifer/Emma from preschool ballet. Simone loaned Emma her spare pink leotard on the first day of class. Jennifer… hi, I say. Oh no, she says, shocked. It was your husband who had the accident? Yes, I say. But you shouldn’t worry about me, I smile ruefully, you have enough heartbreak in your family. (Her oldest daughter is disabled, CP, I think.) Yeah, maybe I’m just weird, she says, but from the moment I heard about this, I needed to know who it was, to connect with them, to help them. I know, I say. There is, perhaps, a bond that caregivers have. I’m already feeling it, when I see the new families walk into Rehab Trauma. We’re Day 38, I want to say, you poor things at Day 2, oh, you must be so terrified. Karen G. offers to take Simone with her to the park after class. I have an 11:45 doctor’s appointment, made before Bob was hurt, just a 15 minute drive from the hospital. 9:30a Gina, our next-door neighbor from Seattle, pulls up in Bob’s Acura. Charles and Lisa flew out of San Jose the day before, and left her the car in long-term parking. I am busy straightening and getting ready to vacuum when she arrives; stop that right now, she says, I’ll take care of that. Don’t you want to get to the hospital? Yes, I do. 10:20a I listen to the most relentlessly aggressive music I have on the drive over. It is my only hope in avoiding another weepfest. So far so good. There is NO parking at the hospital. And, unlike UMC in Las Vegas, there is no other hospital or medical office nearby into which I can overflow. Along with 5 or 6 other cars, I circle and circle. A mirage? Walking into the parking lot, a tall red-haired woman; I recognize her as a patient family member from Rehab Trauma, she’s there every day like me. She gave Graham an cherry Otter Pop on Sunday, reached right into the nurses’ freezer to get it for him. I swoop around a row or two, pull up next to her, turn down the blasting stereo, lower the passenger side window: hey, I say, I know you. Boy, parking’s a bitch today. I’m just over here, she motions, and I’m leaving. Follow me. So I creep forward to her green Neon, give her just enough room to back out, and swivel into the space, the envy of the other drivers. Yes, they’ve been circling longer but lack my take-no-prisoners attitude. I head up to Trauma Rehab. Hello Jacque, Kim starts, Bob was awake all last night, just kept staring ahead, wouldn't talk, didn't go to sleep at all, the doctors are worried about him, do you have any idea what that was about? Gulp. Guilty. I greet Bob as cheerfully as I can, kissing him on the cheek. I can only stay for an hour, I say, I have a doctor’s appointment in Sunnyvale. His eyebrows go up. Nothing serious, I say, just the usual girl stuff, I scheduled this appointment back before you were hurt. I go to my appointment an hour later. They keep me waiting 45 minutes with no updates. I ask to reschedule. They are kind, but unapologetic. 1:15p I arrive at Peers Park. Karen G. is there with her son and Simone. For the first time since I left for Seattle 10/24, I see my Palo Alto friends: Sunita, Lisa K., Lisa B. They have done so much to help our family since Bob was hurt. I don’t even know how to thank you all, I say. No thanks necessary, they reassure me. 4:45p Carly is home from school and agrees to come with me to the hospital. Can we drive through In-N-Out, Mom, I’m starving. Bring your homework, I say, let’s go. 6:00p Back in Bob’s hospital room. Dr. Laroque, an orthopedic doctor, and Amir, a medical student. We have come to check out Bob’s wrists and see if immediate action is indicated. Do you have pain in your arms? Yes? Do you have feeling other than pain? A little? We just want to take a look to make sure nothing is infected. Does it hurt here? Can I see you move your fingers on this hand. (left) It is at this point I get up to look. Yes, the tiniest amount of movement in his fingers, the tiniest amount in his thumb. I do not see any movement when they ask him on the right. Is he right-handed? She asks. Yes, I say, and he’s a software engineer, so it’s really important that the wrist repairs be as well-executed as possible. She mentions that the bone on the right has extreme comminution (by this point, I know that means it’s in many fragments). He will be prone to extreme arthritis in that wrist regardless of how much repair they do. They go to re-wrap his arms, and Bob mouths: Nurse. Did you say nurse? the doctor asks. She turns to me, do you read his lips well? No, I say, and I’m almost defiant about it by this point. My problems with authority are as profound as my problems with lip reading. Let the nurse do it? Is that what you said? Yes. Mr. Lord, once we wrap them up, there is no reason for them to be unwrapped again. There is no sign of infection, and your plaster splints are in good condition. I butt in. The nurses have been unwrapping them to do pin care, I say. I think he probably means that if they’re unwrapped now, the nurse should do the pin care so she doesn’t have to unwrap them later. OK, says the doctor. Bob, she says, your wife wants the nurses to do pin care now, so I’ll have her ask the nurse to do the pin care and re-wrap. WAIT A MINUTE, I want the nurses to do the pin care? I was stating a fact, not making a request. So the medical student comes back with two ace bandages, and gets ready to re-wrap, and the doctor says, “No, the nurse is going to do it after pin care.” They disrobe, wash up and leave, without talking to the nurse! Adora comes in and sees Bob’s naked arms. Oh, they’re going to leave them uncovered now? she asks. Uh, no, I say, I think they want you to re-do them after you do pin care. But I already did the pin care this afternoon, she says, I guess I’ll do it again. It is at this point that the doctor and the medical student remember they need to talk to the nurse. They talk through the door (not wanting to come back in because it means they’ll have to suit up.). Will you re-wrap those after you do the pin care? they ask. Adora is turned away from them. She rolls her eyes so strongly I’m surprised she doesn’t knock herself over. I already did pin care earlier, she says, but I can do it again and then wrap them again. I got the ace bandages for you, the medical student says. They’re over on that table. Adora rolls her eyes again. This time in the other direction, I notice, as not to bulk up unevenly. 6:25p Adora is measuring Bob’s legs from mid-thigh to knee, then from knee to mid-shin. She then measures circumference at certain points. I ask her why. She tells me if there is more than 2 cm difference between the two legs, they suspect blood clots. A leg with clots will swell up, but not very noticeably at first. That’s why you measure. 8:20p Rick from Respiratory tilts Bob and does a breathing treatment. Bob’s heart rate soars into the 160s. Your husband is one of the more sensitive individuals I’ve seen, Rick remarks, doesn’t take much to get him agitated. He finishes his work with the heart monitor beeping loudly. As he packs up to leave, I go to Bob’s side. Young man, I say, I’m so sorry he has to do that. Are you OK? Try to slow your breathing. In a few minutes, he calms down. I need to get Carly home, I say. I don’t want to be alone, he says. Let me take her home and tuck in the kids, I say. Do you want me to come back? Yes. OK, let me put the kids to bed and I’ll come back. 10:55p Because it is well after visiting hours, Protective Services detains me until Rehab Trauma OKs me upstairs. I put on my garb and go in to see BL. He seems happy to see me when I first come in, but then something goes wrong. He talks, and as is our pattern, I can’t understand, say it again BL, and he loses patience, all of a sudden, very clearly articulated, forcefully spit: Go! Go! Go! Go! although it sounds like Ko! Ko! Ko! Ko! Are you telling me to leave? I ask. Yes. Go. Now. I just got here, I say, you said you wanted me to come back. I’m going to sit over there for a while. You don’t have to talk to me but I’m not going anywhere. I start to set up my computer. I am shaking so bad, I have trouble plugging it in. He continues to mouth words from his bed, an angry expression on his face. You should watch yourself, BL, I say, only half-joking, I’m online here and computer dating is starting to look pretty good. *** Later on, he starts coughing. It goes on for a while. I walk over to ask if he wants me to get a nurse. He shifts his eyes right to glare at me. Take your seat NOW. Take your seat NOW. Take your seat NOW. I call the nurse and take my seat. I do not approach him again, but in light of his “I don’t want to be alone” comment, I stay until 3a. From jacque@oz.net Thu Dec 5 19:29:02 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Thu, 5 Dec 2002 11:29:02 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/4 Message-ID: <19480.66.166.17.192.1039116542.squirrel@www.oz.net> Wednesday, December 4, 2002 Graham's parent/teacher conference runs from 1:30-2:30p. Normally these things get ~20 minutes per child--but obviously we have quite a bit to discuss. Poor Mrs. Spencer is having sciatic trouble, she shifts back and forth in her seat—but admits she feels like a heel wincing in front of me. Not to worry, I say, we all have the right to complain about our personal pain. My humanitarian stance on this does not extend to health care workers, however. ;) She has a lot to say about Graham, who is working well above grade level but shares his mother’s erratic temperament. Under ordinary circumstances, iIt rattles me to sit on small chairs and listen to what’s wrong with my kids. On the overall trauma scale now, though, pretty much a non-event. What can I say: BRING IT ON. 3p West outside lot full at VMC, I follow a stream of cars to an indoor garage on the north side of the hospital. Farther from Rehab Trauma, but plenty of spaces. Before I enter Bob’s room, Dr. Wallbom stops me in the hall. This is the first I've met her; a woman named Agnes should certainly be older. Do I know about our Friday 11a patient family conference? Yes, I say, I’ll be there. I’ve ordered some additional tests for your husband, she says. Tonight Bob will have an MRI of his head and cervical spine. I also understand you are upset about the communication difficulties, she says. It's been 5 weeks, I say, I am floored that we can’t do better than this. There might be other things we could try, she says, computer-based things, but your husband's MRSA infection prohibits us from bringing equipment like that into the room. I don't really press her on this. The speech therapist tried working with him using an alphabet board, she says, but he doesn't want to do that, prefers we try to lip-read. Yeah, I can see Bob working with an alphabet board….NOT. What is the delay with getting him a fenestrated trach? I ask. The MRI will give us a better idea of where to go from here, she says. If his cervical spine is not completely stable, even the vibrations from speech can be problematic. Now this is news to me. Of course, it comes across as complete horseshit but I didn't go to medical school so what do I know? But I start wondering about the neck trauma from intubation, or the trach, or the collapsing bed back in Nevada…and we’re worried about vibrations? She says she'll try to stop by after she does an admit and sees a few patients; I’m not counting on it, but at least we’ll learn more on Friday. Mental note: get to Costco for tiny digital voice recorder. *** Good afternoon, young man, I say, planting a mask-covered kiss on his cheek. I hope you've been having a good day. He opens his eyes briefly, and then closes them again. I set my things down. I realize that I am still smarting from being “yelled” at last night. BL, I say, I'm going to tell you something, and I'm only going to say it once. He opens his eyes. I know you are frustrated by trying to communicate with me. I am doing my best to understand you. I am working very hard at it. I love you very much and it pains me not to be more helpful to you. But let me be clear: if you yell at me again—and yes, I can tell you’re yelling even though you’re not making a sound--if you are rude to me again, I will leave and not come back. Do you understand? No response. I said, do you understand? Yes. (It is at this point the nurse comes over and tactfully closes the door.) Good. Because I’ve put my life on hold for 5 ½ weeks to be with you. I’ve shortchanged our kids, neglected my own needs…and regardless of how this ends up, I will make sure you are taken care of until I am cold and dead in the ground. I don't expect you to be grateful. I know you would do the same for me. But let’s get this straight: I am not the person who did this to you. You sure as hell have a right to be pissed off at someone, but it isn’t me. *** Good. Those parameters established, I can move on. *** Rick, the nurse, is training another young man. They work extensively on Bob’s legs, measuring circumference at several points, length at others. They make cryptic markings on his skin with a red Bic gel pen. Bob is flat on his back and talking up a storm. BL, I say, do you have questions about what they’re doing? Yes, he says. Rick, I know why you’re making measurements, but would you please explain it to Bob? Rick gives his spiel. If there is more than a 2 cm difference on the same measurement between the two legs, blood clots are suspected and a Doppler is ordered. He sets the pen on the side table. I hold it up so BL can see. They’d better not charge us for this, I say, I can get these in a 24-pack at OfficeMax. Bob smiles. He continues to “talk.” Very clearly enunciated: trebuchet. Trebuchet? I ask, unbelieving. Is that really what you said? Yes. A smile. Trebuchet: a medieval catapult for hurling stones. I try to place how I know this word. Oh yes: Graham talks about it in relation to playing AOE. Oh, I say, you want to throw rocks at them? *** Rick and the other man continue Bob’s care. They each unwrap an arm. Bob talks, alarmed. Are you in pain? I ask. No. Say it again. Don’t break the pins. Is that what you said? Yes. They won’t, BL, they’re just going to clean them. Rick is using a long Q-tip dipped in…what is it, Rick, Betadine? *** A bit later, he asks the time. 5:30, I tell him. I'm going to leave in a few minutes to take the kids shopping. Call ____,he says. Who? I ask. He spells it out. J A N Your Aunt Jan? Your mother's sister? You want me to call your Aunt Jan in Ohio? Yes. What would you like me to talk to her about? Eyebrows up. OK, you can't tell me that. So I’ll just call her. When I get back, what do you want to know? Everything. OK, so you want me to call your Aunt Jan and then come back and gossip. (I laugh.) Do I have that right? Yes. I have to step outside the hospital to make the call. Our conversation is interrupted several times by cell phone disconnect; terrible terrible AT&T service around the perimeter of the hospital I can hear from the emotion in her voice that she is worried about us. Nothing alarming, I say, you should be flattered, actually, Bob specifically asked me to call you and then tell him what we talked about. Kind of weird, huh? She talks about what is going on with the family. I tell her about Bob's life over the past few days. She reads the Bobwatch, so she has the big picture, but I’m glad to add some details that only a close family member would appreciate. *** A big day for communication. Maybe I am getting the hang of this. His next query: What is after this? I misunderstand: I’m going to go home and take the kids for pizza, I say. His eyes shift all around the room, he spends extra time glancing at the monitors above his head. He asks again: What is after this? OH, I say, do you mean where do you go after you get out of this room? Yes. Well, I say, I’m not exactly sure. We’ll find out more at your care conference on Friday. It’s going to take place in this room, and they say they’re bringing someone from speech to help read your lips. I think it goes like this, BL: you’re here in Rehab Trauma until your infection resolves and they can get you sitting up comfortably. Then you move into Rehab, which is the next building over. You’ll continue to be an inpatient there; I don’t know for how long. I bet we can get more info on Friday. Then, I think, we do this “halfway house” kind of thing, a day or so to make sure I have all the skills to take care of you. Then I get to bring you home. Does that at least start to answer your question? Yes. 7p The kids are antsy. Gina has wisely put a limit on snacks—she wants them to have some appetite for dinner. They are near mutiny by the time I get home. I herd them into the van as quickly as I can. We head to the Great Mall of The Bay Area. Shoes for Carly, socks and jacket for Graham, socks for Simone. Pizza slices and soda. I personally am not in the mood for mall food. Between shops, Graham goes on and on about how he wants an XBox or a PlayStation. No Gray, I say, the rule has always been that I won't have one of those systems in my house. Too disruptive, too addictive. How is it any different from a GameBoy? he wonders. Don't push your luck, I say, or I might go medieval on hand-helds, too. We all come home. Gray and Simone are tucked into bed. Carly settles into homework. I head back to the hospital. 10:15p Bob has just returned from MRI. He is grimacing, his mouth twisted open. I wait a few minutes for his handlers to leave the room. Your breathing is sounding labored, BL. Do you need to be suctioned? And are you in pain? Yes. Where does it hurt? I ask. Your arms? Your back? Everywhere. I poke my head out and call for Rick. He needs to be suctioned, I say, and he says he's in pain. Bob responds to the suctioning; he doesn't like it but the rattle goes away. I ask, what can you give him for the pain? Well, he's not due for any more Vicodin yet, he says, but I can get something for him. Rick disrobes, washes his hands, and comes back a few minutes later with some....Tylenol. Oh, c'mon, I say, TYLENOL? TYLENOL? For chrissakes, I've got Tylenol in my purse, I could have him that myself. Rick, my man, we look to you for the good stuff. Bob is really hurting. His teeth are clenched and his brows are knit together--he is making noises with his mouth. On a scale of one to ten, Bob, where is your pain? Seven. BL, I say, can you narrow it down? Where is the pain? How can we make you more comfortable until you can have more Vicodin? He mouths many words, slow down, I say, but I pick out: pull leg hard as you can big toe straighten foot. I’ve seen Bob classified as ASIA A, but I’ll admit to being a novice in these things; I can fully understand that there may be difference between mobility and sensation. And pain might be possible even if other sensations are not. A bitch, that. Are these phantom pains? Or what are they called for someone who still has the limb but not the neural connection to it? Which leg? I say, not wanting to mess with the right one if I don't have to. Bob repeats: pull leg foot hard away body big toe hurt. I do pull hard, on the left one, at least, and do what I can to rearrange his limbs. I am frightened of hurting him further or dislodging the clot. It is awful to see him in pain like this. A new nurse, Rosemary, comes on and calls the doctor to OK more Vicodin. The pills are ground and mixed with water, then injected into the feeding tube. You should feel some improvement in about 30 minutes, she says. Now I remember why I like morphine. I put a wet cloth on his forehead and massage the top of his scalp with my fingers. Hang in there, BL, I say, try to relax. You should be feeling better in just a little bit. He settles down to sleep. It is 1a. I listen to Michelle Branch on the way home. If you want to, I can save you I can take you away from here. From jacque@oz.net Sun Dec 8 07:35:47 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Sat, 7 Dec 2002 23:35:47 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/5-12/8 Message-ID: <22704.66.166.17.192.1039332947.squirrel@www.oz.net> I will be taking a few days away from public disclosure. Take care, all of you. From jacque@oz.net Tue Dec 10 00:46:01 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Mon, 9 Dec 2002 16:46:01 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/8 Message-ID: <3030.209.86.3.125.1039481161.squirrel@www.oz.net> Sunday, December 8, 2002 Everyone sleeps in at our house. Gray and I are the first ones up. Then Simone. We eat breakfast, I putter around putting things away. Graham and I set to sorting the recycling, which has been piling up due to our inability to get the bins out to the curb on the right day. Our scale is out on the garage floor. Simone weighs 39, Graham weighs 68. I weigh…well, more than Graham and Simone combined. But less than I did before BL got hurt. As does he, by appearances, at least. Graham is sniffly and upset all morning. He has the beginnings of a cold, although we both understand it is about more than that. ‘I hate every single thing about my life’ is what he says today, and has said over the past few weeks, again and again. I beckon him into the garage office, we shut the door for privacy. I pull him down on my lap, lean your head back on my shoulder, Gray, I say. He cries. So do I. The room is very warm, the baseboard heater turned up too much for the small space. This is beyond manageable for him, being so close to his Dad. Not that a material item could improve his life much, but perhaps its associated symbolism will: something he’s wanted for years, plus my willingness to accept that extraordinary circumstances call for extraordinary concessions. I feel myself crumbling on the GameCube issue. *** There are a series of single screen movie theaters on Winchester Blvd. close to the hospital. We drop Carly and Graham at the 2:45p Harry Potter. Simone and I continue to VMC. We stop by the vending machines on the way in. Up in RTC2, Bob’s MRSA contact precautions have been lifted; we can skip the barrier methods. Simone, do you want me to lift you up so you can see Daddy? No thank you, I’ll stand here. She carefully backs toward the door. I walk over to kiss BL on the cheek. Hi, J-L, he mouths. Hi, Simone. Simone walks over to the left side of the bed. Daddy, she says, Mom got me Famous Amos. I’ll save one for you. He smiles. But enough family togetherness. A moment later: I’m having trouble breathing. I got out into the hall. Who is Bob’s nurse? I ask. He says he’s having trouble breathing. I sit down while Jeff is suctioning. While my laptop is starting up, I get Simone settled in with crayons and paper. Bob is coughing, silently. Jeff leaves. Come talk to me, Bob mouths. Come talk to me. So I do. I talk about what’s going on at home. About our long-needed trip to the recycling center—I’ve been home two weeks, I say, and I haven’t gotten back in the habit of dragging the bins out to the curb. And I just figured out how to get the garage door open again. And you know what’s coming up for you, BL? They tell me that tomorrow or the next day they’re going to start sitting you up in a wheelchair. Then, I continue, once you can tolerate three continuous hours upright, you can move down to Rehab. Home, he says, I want to go home. I want you home too, love, but we have to get through this first. How long? Late last week, Dr. Wallbom gave me some very tentative dates: December 16 to Rehab, February 6 discharge to home. To be honest, both dates were closer than I would have guessed. Particularly in light of his injuries. Sadly, someone with Bob’s C 3/4 quadriplegic diagnosis will “run out of goals” sooner than someone less grievously injured; there isn’t much they can teach him to do independently. On paper, these dates don’t look too bad. But when it comes time to say them aloud, I hesitate…well, I almost wish I could lie because they sound impossibly far away when viewed through the eyes of someone who’s been staring at the ceiling for the past 6 weeks. Two more months, I say quietly. Around two more months. He closes his eyes tightly. Oh, BL, I say, I know that sounds terrible, but I’ll come every day. You know I’ve been with you every day since you got hurt, don’t you? Yes, thank you, he mouths, a tear rolling out of his left eye. Young man, I say, surprised, you don’t have to thank me. His next word shocks me: money. Did you say ‘money’? Are you worried about what this is costing? I ask. Yes. Listen, I say, we’re going to be fine. You have good health insurance. Whatever it doesn’t cover, we’ll figure out later, OK? Remember when Carly was born and you went and arm-wrestled with the hospital billing department? Well, I’ll do that if need be. And I’ve applied for disability, that will take a while to start up but should cover us once it does. And listen, bills are getting paid, I’m being a little creative with the accounting, but the bank balances are fine. Please don’t worry about money, OK? Lots of people are looking out for us. No one is going to let us starve. OK, he says. Get the nurse. The nurse. I call Jeff. He comes in. You want something to help you sleep, Bob? Is that what you said? Yes. Jeff leaves to get the meds. Simone and I pack up and retrieve the two older kids from their movie. *** Next to the theater, a day care center. Openings available, it says on the outside. Hmmm. Might be perfect once we move to Rehab and I will need to take instruction during the day. I enter the number into my Visor and plan to call them in the morning. Daycare. This, from an attachment parent. This from someone who sleeps with her babies. Who breastfeeds her kids until they go off to college. Who learned to fold laundry and put on a fitted sheet one-handed because she wore her high-need kids all day long in a babysling. Yes, it is wonderful to be back with Simone. But when I need to be with BL, to care for him, to speak for him, to learn the skills to make his life even possible—I can’t be two places at once. Even a dedicated parent has molecular limitations. Remember: extraordinary circumstances call for extraordinary concessions. So I will call the daycare and see if it is a good match for our part-time needs. But don’t expect me to like it. *** 8:30p I hand Carly a $5 bill. Make sure Simone gets to bed with clean teeth and an empty bladder. Graham, lights out for you after Malcolm in the Middle. Bob is very alert when I arrive. Hello, young man, I say, did you sleep well while I was gone? No, he mouths. I walk over to set down my things. There is a rosary on the table. Uh, who left this? I ask the nurse. I thought it was yours, she says, I fished it out of the trash. I can’t explain it. Maybe left by a visiting chaplain? But who put it in the garbage? Bob and I are both atheists; nevertheless, my 12 years of Catholic school have left me with a comfortable fondness for the rituals of the religion. I’d probably try to wear it around my neck if my dreads didn’t make me such a fathead. I leave it on the table. I turn to Bob. He looks anxious and is talking. I lean over him. Upset, is that what you said, BL? Are you upset? He mouths it very clearly. He’s asking me: Are YOU upset? Oh, no! I say. Sonia and I here were just having a spirited theological discussion. *** 9:15p Hold me. Hold me. Do you want me to hold you? Yes, please. I lower the rail on his left side. I stop for a moment to figure out the best way to get around the four black posts of the Halo. I slide my left hand to gently cup the right side of his neck. My right hand strokes through his hair. I bring my lips to his left cheek. I wish I could hold you better than this, BL, I say, I miss you so much. *** 10:30p After a breathing treatment, four nurses come to reposition Bob. They decide to change out the soft pads beneath him; they are pilled and a little torn, it is important that the linens be as smooth as possible to avoid skin breakdown on a bedridden patient. It is more wrangling than Bob is used to. His eyes are open wide, he is spitting each word urgently. What are you saying, the nurse asks. Say it again. I don’t understand. Jacque, can you understand him? I sidle up between the nurses on his right side. Tie you to what? Say it again, BL. He struggles to clearly enunciate the last word: CART. Tie you to the cart? Is that what you’re saying? Yes, he says, I’m falling. I’m falling. I’m falling. No sweetie, I say, you’re not falling. They had to roll you up on your side to change out the linens. Please don’t worry, there are four huge bedrails holding you in place. You are not falling. I won’t let you fall. I’m falling, he says. You’re not falling, BL. Then I think I’m falling. *** 11:00p I need to get home. Before leaving, I step out to get a nurse for Bob. He needs his mouth suctioned, I say. Sonia jumps to her feet and goes in. The other nurses are sitting down, writing in charts, snacking on popcorn, chips & salsa. Have something to eat, they say. We get to chatting a bit. They ask about the kids, what exactly it is I’m doing tapping on the computer all the time, how late I usually stay. Someone tells a joke, and we all erupt into laughter. Sonia leaves. I go back into Bob’s room. Are you feeling better now? I ask. Yes, he says. Laughing. Who was laughing? It was the nurses, I said, someone made a joke and they were laughing. I was laughing too. Listen, you, it’s a rough life for them here at night. They need to laugh every once in a while. So do I. You were laughing too? Yes, I say, I was laughing, too. I’m sorry, was the noise disturbing you? No. He waits. I'm dying, he says, and people are laughing. From jacque@oz.net Wed Dec 11 04:24:27 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Tue, 10 Dec 2002 20:24:27 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/9 Message-ID: <12416.66.166.17.192.1039580667.squirrel@www.oz.net> Monday, December 09, 2002 The older kids bike off to school. The house is silent, Simone still asleep. It hangs over every weekend, and it haunts me every night: lonely. Lonely. Lonely. Like a mantra. I know I shouldn’t dwell on it. I try to steer my mind elsewhere, but the rut is too deep: lonely. Lonely. Lonely. I don’t want to call a friend. I don’t want to talk to my sisters. I love my kids but they can’t touch this one. BL is gone. How much of him will I get back? Will he be like a husband to me, or just another child? Yes, it is cruel to put it that way, but a better description escapes me at the moment: feeding, bathing, toileting, carrying. I love Bob but analyzing my future life makes me want to go back to bed. Instead, I run the bath. The tub is small, but I can float on my back if I bend my knees. Elbows up, I put my hands behind my head. Ears submerged, my face above water. Harley’s barking a far-off whale song. It feels so delicious to fall asleep; I don’t care if I slip under. I’m confident I’ll sputter to life if need be. Ninety minutes later, Simone opens the bathroom door, Mama? Mama, can I come in the bath, too? Best rest I’ve had in weeks, and the water was still warm enough for Nu-nu. I think I’ve discovered a new morning ritual. *** It is raining; I intercept Graham on his bike ride home. I take him and Simone to Starbucks for hot chocolate and lemon bundt cake. No seats open, all these useless types homesteading entire tables with their laptop computers. Get a hospital room like me, you jerks. *** I am not able to go to the hospital until Carly comes home; both Graham and Simone have colds and cannot visit their Dad. At 4:30p, delivered by an angel, dinner in the “hot” cooler outside our front door: Teriyaki salmon filet, steamed rice, peas. A single bite of the pink, oily flesh--I am homesick for Seattle anew. *** 6p I arrive in BL’s room. It really feels terrible to get here so late in the day. He’s had a full day of activities, and I hate to miss that. He immediately starts talking. Call ____, he says. Call who? A-N-D-R-- Andrew? You want me to call Andrew? The tax guy? Yes. Uh, about what? His mouth moves rapidly. I don’t get any of it. I cut him off. BL, listen, the tax guy is in contact with Lynne who is contact with the lawyer who is in contact with the HR person, this is all being handled, and you don’t need to worry… He stops me. No, he says, credit card. What about the credit cards? I ask. Carly. Carly? Our Carly? Yes. You want Carly to have a credit card? His lips purse in exasperation. Call Andrew. Cancel them. Cancel the credit cards? I ask incredulously. BL, I have only the one. I need to use it. Carly, he says. Yes, what about her? I ask. Carly is stealing. Cancel the credit cards. Are you talking about our DAUGHTER? I ask. She’s 13! Yes. OK, let me see if I have this straight, I say. You want me to call Andrew and cancel our credit cards because Carly is stealing from us. Do I have that right? Yes. BL, she is NOT stealing from us. Cancel the cards. Can I email Andrew or does it have to be a phone call? Call him. OK, BL, let me write that down so I get it right when I talk to Andrew. Well, look here, me without a pen. I’m going to step outside for a sec and borrow one. Shaking my head, I walk out to the nurses’ desk. Uh, I say, what are you GIVING him? *** 7:40p Razor, he says. Yeah, I say, you need a shave, shaggy dude. Sweats. Did you say “sweats”? I ask. Razor, sweats, you got a date or something? From home. Oh, you want me to bring you stuff from home. Yes. OK, give me a list. (I grab my omnipresent notebook and borrowed pen.) Sweatpants, sweatshirt, T-shirt, underwear, socks, shoes, and an electric razor. Oh, I say, I get it now. You’re planning your escape. Has a date been set? They said to bring it. BL, are you messing with me or did they really ask you to get this stuff? Bring it. Please. Bob has been essentially naked since his clothes were sliced off him in UMC Trauma 10/27. It is not so farfetched that they might want him more presentable propped up in a wheelchair. *** 8:30p Cash, he says. I have a little, I say. You need some? I smile. Put cash in a box, he says. A box? Where, at home? How much? In a bank, he says. $10,000. Whoa, I say, you want me to withdraw $10K and put it in a safe deposit box? Yes. Call Andrew. Poor Andrew, I think. Why do I need that much cash? I ask. Some people take only cash, he says. OK, so how do I do this? Do I need to go to Schwab? Take out $5000 twice. OK, BL, I say, I’ll check with Andrew on this one. Tell him I’ll pay him, or you’ll pay him, he’ll get paid. OK, I will, I say. Just so I’ll know: are we trying to hide assets? No. Is this for the coyotes to break you out, I ask? He smiles. Perhaps he wants me prepared to post bail for Carly? *** 8:45p BL’s meds, administered en masse (and I bet I missed a few) Neurontin—for nerve pain Trazadone—to help him sleep Adivin—anti-anxiety Rifampin—antibiotic Coumadin—anti-coagulant Metopropol—beta blocker *** 8:55p I am packing up to go. BL, I say, I need to get home to the kids. They dropped me, he says. Who dropped you? I ask, startled. From chair to bed, they dropped me. When you were moved to the wheelchair today? I ask. Not bed to chair, chair to bed, he says. They dropped me. Oh my God, BL, is that true? Yes, he says. Are you OK? I’m worried about the halo, he says. How many people were helping you? Two, he says, and they dropped me. That must have been terrifying, I say. It was horrible. From jacque@oz.net Wed Dec 11 06:43:56 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Tue, 10 Dec 2002 22:43:56 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/10 (long) Message-ID: <12752.66.166.17.192.1039589036.squirrel@www.oz.net> December 10, 2002 10:00a I arrive to find Bob in pain; physical therapist Bethany has just completed ROM (range of motion) exercises on his arms. An ice-and-water-filled latex glove rests on each shoulder, secured by a white terry washcloth. Next time, Nurse Diana says protectively, call us thirty minutes before you come so we can give him Tylenol. Hire her, Bob says to me, she can come to our house. 10:20a BL, I say, waving a bag, I brought the clothes you asked for. Show the clothes to the chair doctors, he says. Talk to them about the fall. Have chair doctors teach nurses to be safe. I will, I say. And don’t worry, I’ll make sure I’m here today when they move you in and out of bed. Diana walks in to tell us that O/T will bring the wheelchair back at 1p. Please, stay until then, he says to me. Please don’t leave. 10:45a Jodi (psychology intern) comes to ask me questions about Bob. Is he verbal (yes), analytical(yes), high IQ (yes), determined (yes), easily overwhelmed (no), a can-do sort (yes). As strange as it sounds, he is an ideal candidate to rise above this type of injury, she says. What are his hobbies? Most of what I mention is intellectual, with the exception of a few physical pursuits--racquet sports, bicycling. It sounds like he was mostly about life from the shoulders up, she comments, and he’ll still be able to work that way, of course. She mentions that he seems so much more clear in the past day or so, do I think so, too? Yes. She asked about past medical history, drug use, drinking,---he comes up pretty clean on all counts. Any depression? she asks. Not per se, I reply, does being terminally pissed off count? 11:30a Talk to me, he says, keep talking to me. I tell him about the kids. How Simone skipped off to preschool this morning and didn’t look back. How Carly has switched to walking to school, for today, at least. How Graham has a cold and is very disappointed not to be able to see him for a few days. This is hardest on Gray, I say, being apart from you. You two, thick as thieves, computer buddies—an life raft of testosterone in a girlie sea. He smiles. BL, I say, get your sorry butt home so you can play computer games with Graham. You play? No, nobody plays with me, I say, I have no friends. But thanks for asking. You should play with Graham. Me? Computer games? God no. You should play with Graham. 12:05p BL, I tell him, I’m going to get one of those nasty microwave burritos for lunch. I’ll be back up in five minutes. I head toward the door. He’s making noises with his mouth. I turn around. Jacque, Jacque, he says, please be here when they move me. Stay until I am back in the bed. Yesterday they dropped me. Stay until I am back safely in the bed. Five minutes, BL, and then I won’t leave again. I promise. 12:45p Diana gives Bob Promatine to elevate his blood pressure---essential for him to be sitting up. Jane comes to suction, and per Dr. Wallbom’s orders, demonstrates and explains the procedure to me. Do you want to try it, she asks? I do a little bit, but then I hand it back to her. It makes me queasy to stick a tube down a hole in my husband’s throat…guess I’m not ready yet. 1:45p Michael from Occupational Therapy arrives. Bob says he was dropped yesterday, I say, says the nurses didn’t use the board. Michael looks alarmed. Dropped? he asks. I’m so sorry, Bob. Let me look into it. He finds the nurses who helped Bob yesterday. They admit to losing control a bit and that all three—Bob included—fell onto the bed. 1:50p Michael from Occupational Therapy rolls in a wheelchair. Kelly from Speech Therapy arrives at the same time. They take it outside…looks like they have a scheduling conflict. Kelly: Mr. Lord, we’re going to try to do some talking now. (To Connie the RT: is the valve on? Yes, it already is.) Mike from O/T wants to move you, so we’ll keep the valve on while he’s doing the transfer . Diana gets to work preparing Bob to be up, putting thick knit beige stockings on his legs. Connie is suctioning, the valve helps bring up more secretions, she says. To no one in particular: part of what you’re hearing is that he’s leaking around his stoma. Mr. Lord, Kelly says, clear your throat, tell me what you want me to call you. Is ‘Bob’ OK? There are four adults in the room besides BL and me. A veritable circus. It’s a bit overwhelming. *** Michael leans over Bob: I’m going to go over the steps of the transfer. I don’t expect you to remember them, through repetition, though, you’ll have them memorized. Get both the bed and the chair stable—all surfaces involved in the transfer locked and stable. We want to get you sitting up on the edge of the bed—this is for a two person transfer. Sliding board—this one has your name on it and will not leave your room. We want to protect your skin, not shear your skin. That’s why you’re being turned so often. We want to be sure that when you’re transferred, we’re not sliding you on the board. When we put the board down, we put it in at an angle to not shear your skin, or pinch your genitals. If you’re ever having a new attendant and they’re transferring you, it’s best to go down easy. Teach them to block your front with their knees. It’s good to get you all the way into the chair, all the way, back, the one thing about the recliner is, we reclined it just a little bit, about 10 degrees for your comfort today, but straight will be better overall, less chance of you sliding off. *** Bob, says Kelly, it’s an experiment, we’re going to leave the Passey-Muir valve in place during the transfer. But before we move you, let’s see if you can talk. They’ve done this once before, but I wasn’t there. Today, I hear his voice for the first time in 6 weeks. “Hi Jacque, I love you.” It is very, very faint. Very, very breathy. Kelly says she’s going to recommend an ENT consult for swelling or damage to the vocal cords. Both yesterday and today, he was breathier than they thought he should be while speaking. Bob’s shoes and socks are on. Now Diana needs to flatten the bed to pull up his sweat pants. Connie says she needs to take out the valve, if he’s flat on his back, I’m worried about him aspirating. Any last words for your wife, Bob? they ask. He smiles: Until we speak again. Personally, I am charmed, but Connie is a hard case: Aw, she says roughly, how romantic. So out comes the valve. They will try again tomorrow. *** Diana raises the head of the bed until it is nearly upright. Bob talks, voiceless, but we all get it: Dizzy. Dizzy. Dizzy. Sit with it for a minute, Michael says. Bob says, I’m OK now. A different nurse injects a heparin lock. Michael and Diana are ready to move Bob. Michael speaks for both their benefits: The very first thing I do is get the bed in position and lock it. Get the chair in position, make sure the reclining back is good, the wheels are good. You’re already sitting up, Bob, now we need to position you on the side of the bed. We need to be really careful with your hands. What I’m going to do first of all is to get his feet off the side of the bed, so I can block them with my knees. If you’re having any problems, until you’re speaking, I’m not going to be looking at your lips, so if you feel something’s not right, click a couple of times, can you do that? (I am typing rapidly to get everything he says, but I make myself look up occasionally. I feel ill. My husband as rag doll, stabilized only by his halo. I see his terrified eyes, the hair matted on the back of his head. This is awful.) Michael goes on: we still need to get you over to the edge of the bed. Something hurts? Gentle? Are you OK? Blue board? Is that what you said? What did you say, Bob? Blue balls? Scrotum. Oh, I see, are your genitals pinched? Yes. He remembers, Michael says, blue balls. We used that phrase yesterday when talking about being careful with his genitals. Bob, we’re right in the middle of the transfer, we’re just getting all your tubes in the right place. (To Diana: now, move this arm out of the way.) Bob clicks. I can’t, he says. Can’t what? Can’t move my arm, Bob says. You don’t want us to move it? No, I can’t move it. Oh, says Michael, I was speaking to Diana. Hey Bob, looks like you’re sitting a little straighter than yesterday. Did that make sense? It’s just in steps. The sliding board will be here, it has his name on it. Michael adjusts the leg rests. Tomorrow I’ll have arm troughs for him, and we’ll be able to elevate. It is mostly the pillow today that is keeping his arms comfortable It is 2:35p. Bob is strapped upright in a wheel chair. *** He should not be left unmonitored, Michael says. Jane says, I’ll be right outside charting, and Jacque, you’ll be here the full time, yes? Yes. Michael promises to come back in an hour to get Bob back into bed. Normally, it’s done by the nurses but since Bob was dropped yesterday-- he’ll come back to help him feel more secure. Don’t leave me, Bob says, talk to me It was so painful to see him transferred, but very wonderful to see him upright. Yesterday 45 minutes. Today, an hour. Normally they would increase at a more rapid rate but because of his scare yesterday, they’ll take it easy. *** 2:50p Jacque. Jacque. My vision is dark. I motion to Jane. She comes in. Can you see me? Can you see Jacque? Yes. I’m going to mention it to the doctor, she says, but he says he’s not feeling faint, and obviously he can concentrate and answer our questions, I’ll mention it so that they can get an eye doctor to see you. She leaves. *** Talk to me, keep talking to me, Bob says. BL, I ask, do you remember how you were hurt? I fell down a mine. Do you want to know more? Yes. Do you know how far? No, he says, tell me. Are you up for it? I ask. Yes. 30 feet, I tell him. He looks shocked. Young man, I say, you fell 30 feet, mostly head-first, from what we can tell. It is a miracle you are alive. You had two symmetric lacerations on the top of your head, and nary a bruise anywhere else. Talk some more, he says. Do you know about all your injuries? I ask. No, he says, please tell me. I start with the thoracic spine fractures and surgery. I mention the T4 burst and the preliminary paraplegic diagnosis. But you knew that from the start, didn’t you, BL? I ask. I’ve read the EMT report from the helicopter guys: patient’s chief complaint is no feeling in lower extremities. You knew before anyone else, didn’t you? Yes, he says. Is this too overwhelming? I ask. Tell me more, he says. I tell him about the cervical spine ligamentous injuries, the expelled disc, the anterior fusion, the halo, the cord damage at C 3/4 that renders him quadriplegic. That’s enough for now, I say, let’s talk about something else. More, please, he says, finish. So I talk about the wrist surgeries. And the broken ribs. And the pneumothorax. And the septicemia and tachycardia. Just about the time I’ve exhausted his list of medical horrors, he asks: Graham? Yes, what about Graham? Home from school? Yes, let me check my messages. And since I don’t want to leave his side, I check my cell voice mail right there in the room even though there is a strict “no cell phones” policy on the ward. TFB. Phone coverage is terrible outside the hospital, not so bad inside. I call Graham back: yes, you did the right thing calling me when you came home to an empty house. Un-kennel Harley, get started on your homework and do your two chores. Carly should be home in a few minutes. *** Bob has been quite alert and tuned in during my little medical rundown, but I can see him fade as he gets past an hour upright. Hang in there, I say, just a few more minutes until Michael comes. Are you dizzy? No. Are things getting darker? No. You’re just tired aren’t you. Yes, he says, very tired. Dr. Wallbom comes in. She says that ENT will come to look at Bob’s throat tomorrow; she is going to ask that they use a 90 degree camera to visualize the cords. There is probably some swelling from the multiple intubations, she says, that may take some time to come down. She comments that he looks really good. And that she’s been impressed with how well he’s answering questions and staying focused. As if to discount her, Bob looks a bit off in to the distance when she talks, and does not respond to her questions. I feel like I have to defend him: you should have been here a few minutes ago, he was very alert and taking in everything I had to say. Boy, am I defensive, or what. *** 3:55p Nurses Rick and Jane come to transfer him back to the bed. No, Bob says, wait for Michael. But Michael has obviously been detained. Rick has his own transfer technique and he and Jane pull it off with no droppage. Still, though, Bob clenches his teeth and grimaces---left shoulder hurts, left shoulder hurts, he says, looks like the range of motion exercises from earlier have really pissed that area off. Better now, BL? I ask. A little, he says. *** Rick works to take off the shoes, socks & sweatpants. BL is flat on his back, sweating, breathing heavily, completely wiped out. Michael from O/T comes in. I’m so sorry not to have been here, Bob, he says, I got detained. Did the transfer go well? Yes, fine, Bob says. Do you feel dizzy now? Michael asks. Yes, a little, Bob says. Did you feel dizzy after sitting up yesterday? Michael wonders. And then Bob says the most amazing thing: “I don’t know. I was too busy sorting out the emotions from being dropped.” Dang! What a turn of phrase. I repeated it back: is that what you said, BL? Yes. From jacque@oz.net Thu Dec 12 23:58:22 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Thu, 12 Dec 2002 15:58:22 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/11 Message-ID: <3025.209.179.211.126.1039737502.squirrel@www.oz.net> December 11, 2002 I don’t come in until 1p, amazingly, the exact hour of the next Passey-Muir miracle. Bob, do you want to speak with the valve before or after your breathing treatment? Before. He’s been waiting all morning for you, Connie from RT says to me. He didn’t want to have his 15 minutes with the valve until you were around for him to talk to. I had an appointment this morning, BL, I say. Remember? I told you I wouldn’t be in until the afternoon. An appointment with whom? he asks. None of your business, I say, looking around. Tell me later, he says. Did the ENT folks bother you already? Yes, Bob says. They stuck the camera down my nose. I’m so sorry, I say, that sounds terrible. By the way, how were your cords? Nothing wrong with them, he says. That’s not what I heard, Connie interjects. I think they said one was normal and the other was ‘sluggish.’ Kelly from Speech Therapy arrives. Sluggish or not, Connie puts on the valve. Bob has an immediate coughing fit. Yeah, the compression from the valve makes them cough, she says. Let me suction you Bob, wait a sec, I only have two hands, stupid as it may be. He’s suctioned, and she can’t get all of it, she overrules Bob and says the breathing treatment needs to come before the talking. Bob is struggling to breathe, he doesn’t fight too hard. They are now using Mucomyst to break up his lung secretions; Dr. Wallbom says it smells terrible but I can’t pick it up from here. Of course, it’s not my nose it’s under. Kelly heads out to look at the paperwork and Connie prepares him to wear the Passey-Muir valve. Lots of suctioning, Bob coughs. Good cough, Connie says, remember what Kelly was saying about clearing your throat. Kelly says she just read the chart entry: one vocal cord moving well, one sluggish. He still has an awful lot of secretions, Connie says. Good, he’s got it on, Kelly says, let me bring you more upright slowly. Not all the way up, Connie says. *** Kelly begins. Are you comfortable, Mr. Lord? Bob? Say something. Good. Bob’s voice is weak, but much more audible than yesterday. Why are your eyes closed, Bob? They’re burning. From the light? No, from the _____. Kelly mops his forehead with a wet washcloth. What do you call your wife? J-L. Lots of people talking, lots of exclamations. I am so excited to finally hear him speak again, it feels like Disneyland/Academy Awards/Tour Eiffel all rolled into one. Please be quiet so I can hear my own voice, Bob says. Will everyone please let me listen? We all shut up, but just for a minute. Then Kelly jumps back in with the cognitive stuff: Is your name Bob? Yes. Are you in a hospital? Yes. Is it June? No. Do you have brown hair? No. Kelly laughs. It looks brown to me, she says. Mostly gray, he says. Can you hear your voice? Yes. Do you feel a difference in your exertion from yesterday? No. What month are we on? December. What year? 2002. Today’s date is? The 11th. At this position, looking at that calendar in front of you, can you see all the way down to the 31st? I don’t know. Are the numbers too small, or is it just the position? I can’t tell. Can you see my face well? The top half. Let me bring you up higher, but I want you to be comfortable. I want to help you remember my name by tying it to someone you already know. Do you know anyone else named Kelly? He thinks for a while. No. BL, I say, we have a niece named Kellie, my sister Laurie’s daughter, in L.A.? Concentrate on voice. What’s your full name? Robert W. Lord. What’s the W. for? William. We’re going to practice your voicing and see how your orientation is. Is that better for the calendar? Not enough contrast, Bob says. Mr. Lord, what day of the week is it? Wednesday. Where are you? In the hospital. Which hospital? VMC. City? San Jose. State? California. You are on floor 2. What is the number of this room? I don’t know. Room 17. But that’s OK, you used to be in 24, so that’s two numbers to remember. Kelly’s pager goes off. I have my computer plugged into the phone jack, so, aw darn, she needs to leave to room to answer her page. *** Bob and I get a few minutes to talk privately. BL, this is wonderful, I say, you almost sound like your old self. I should, he says, I’m still using my same vocal cords. You brat! Yeah, but they say one of them is sue-lug-ish. I’m having to build up all the muscles again. To talk? I ask. To talk, to breathe, to sit up, to keep enough blood pressure. How does it feel to talk? It feels like my chest is collapsing, like more air is going out than coming in. *** Hey BL, since we’re alone, I gotta ask: is Kelly’s line of questioning driving you crazy? Yes. What a patronizing bunch of crap. Yes. Kelly returns. You’re going to be having this twice a day, for 15 minutes. But, as you tolerate it, the time increases. Next a half hour, forty five minutes. You’ll be able to ask questions, tell therapists, what’s going on. Let’s count the numbers from one to ten slowly. Stop for a breath when you feel you’re short. One…two…three….he complies. The days of the week. Sunday…Monday…can we stop? Bob asks. Are you in pain, tired, or short of breath? Short of breath, he says. The valve has been in for 20 minutes. Connie comes to re-inflate the cuff. Kelly and Connie negotiate time for voice practice tomorrow. RT has to suction and put on the Passey-Muir valve. Then Kelly can take it from there. Let’s shoot for 3:30p, Connie says, I think by that time he will have had some rest after being up in the chair. Gradually, Kelly says, we will build up on breath support, muscle control and speech. Just mouth for me now, Bob, to see what you remember. What is my name? Kelly. Who else in your family has that name? Cousin. No, your niece. What city does she live in? Los Angeles. What time do we meet tomorrow? 3:30. Yes, I’ll see you tomorrow at 3:30p. I’ll bring a thick black marker to fix up the calendar. *** 7:45p I arrive back. I got SO LOST in San Jose, due to missing my usual off ramp. Lata, the respiratory therapist, comes in. Good, I’m glad you’re here, she says, we’re been wanting to put the speaking valve in for a while. Bob insisted we wait until you were here for him to talk with. She suctions, and then puts on the Passey-Muir. She leaves the room. We are alone. I look deeply into his blue eyes. Jacque, he says urgently… Yes? … there are three bank accounts… three Schwab accounts, they are … the purpose of this account is to provide a firewall against the other account… I have two 401Ks, check this one here... and this one here…account number is…password is… URL… login… check on the holdback from the sale of … does Andrew know yet how this is all going to work? He is quick. Bossy. Accurate. Numerically oriented. TBI, my ass. But then: and have you canceled the credit cards yet? No, Bob, and I’m not going to. Why not? Do it now. Do you still think Carly is stealing from us? I know she is; Andrew sent me email. WHEN? I ask. You haven’t been in front of a computer for 6 ½ weeks! But he did, Bob insists. BL, if he did, if he did sometime in October before you were hurt, don’t you think you would have told me about it right away? Silence. BL, I say, let me tell you what I think. You’re worried about money, and more than a little anxious anyway about all of this, and Carly ripping us off is how your brain justifies it. Will you at least consider that possibility? Yes. He rests a few minutes. *** It is almost time to take out the valve. I feel like a prison wife on a timed conjugal visit. It was awful, he says. What? I ask. This morning, when they put the camera down my nose. Yeah, I say, that sounds painful. That part was bad enough, Bob says, but the bed was tilted back. They had to use a lubricant, and it ran into my eyes it burned like hell. I couldn’t talk, because you can’t talk with a tube down your nose, at least it’s very hard, and I couldn’t move, and I couldn’t wipe my eyes or get their attention. It was so frustrating. From jacque@oz.net Fri Dec 13 18:17:44 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Fri, 13 Dec 2002 10:17:44 -0800 (PST) Subject: [Bobwatch] (no subject) Message-ID: <14118.66.166.17.192.1039803464.squirrel@www.oz.net> I helped with Bob's transfer from bed to wheelchair yesterday. The staff now includes me in some of their work--time for me to learn the skills to take care of him. Put your knee up on the bed, Jacque, they told me, and support him around the chest--you don't want to hurt your back. I wanted to cry. He was in such agonizing pain. Face scrunched, mouth open in a howl--except he can't make noise, of course. Arm hurts, pinched, he mouthed, back, shoulder...but he can't say which one or where. It is cruel trick, sensation with no motor ability. They gave him Fentanyl patches 30 minutes before they transfered him back to bed, that went much better. I know he's scheduled to be moved to the chair at 11a today. I am scrambling to find care for Simone; I might not be able to get there in time. I will call ahead, though, to insist they work the analgesic angle for all its worth. Later yesterday afternoon, when the back pressure from the Passey-Muir valve set off his coughing, he was frantic, struggling for air, I can't breathe, I can't breathe, he kept saying. He was terrified. The RT was suctioning, coughalating and giving breaths with the bag on one side of the bed, I was suctioning his mouth on the other. This went on for close to five minutes with the heart monitor soaring, the SATs dropping. Finally, they gave him something to calm him down. "Go home and be with the kids," he told me, right before dropping off to sleep. I have felt an incredible rage since I first left the hospital yesterday. I want to drive fast, kick in windows, inflict serious damage on anyone who gets in my way. Poor BL. He is stoic beyond stoic so the pain must be indescribable. No one should ever have to suffer like that. I stopped by a new friend's house to pick up Simone---this woman, Jennifer, has a daughter with CP, and had a playgroup meeting at her house. All these beautiful, vacant-eyed children, rolling in their mothers' arms and on the floor. I watched their mothers rearrange limbs. I tried not to stare at their PEGs as their shirts rode up. I did my best to be gracious but I thought I was going to throw up. Bob's silent scream during the transfer. Wild-eyed and frantic, fighting for air. All these disabled kids. A little too much "real" today. I still feel shaky. If anyone tries to chart my coordinates in the five stages of grief, I'm gonna start throwing things. Jennifer said something very moving yesterday. I was thinking about it, she said, how on the first day of ballet, you were so kind to me. You gave me Simone's 2nd leotard for Emma to use, brand new out of the package, just handed it to me right in front of her. You held my daughter, amazing when most people are scared to look at her much less touch her. I realize now that you were kind because, well, you're probably just that way. But you came to me that day because in some way, we were meant to meet, to help each other. You helped me that day, and now I can help you, too. From jacque@oz.net Mon Dec 16 03:20:55 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Sun, 15 Dec 2002 19:20:55 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/12 Message-ID: <3137.209.179.212.1.1040008855.squirrel@www.oz.net> December 12, 2002 10a I arrive to find Dale, a physical therapist, doing ROM. Bob is in pain, and Dale is offering distraction by way of tales of his years as a C&W singer. Those days are over now, he tells Bob, now I sing in a gospel choir at my church in Morgan Hill. Jacque sings, too, Bob mouths. So Dale and I shoot the breeze, Alto I to Bass II. Fran, I ask the nurse, did they give Bob the Tylenol 30 minutes before P/T? Yes, she says, but it doesn’t seem to do much. I’m going to talk to the doctor about morphine or Demerol. I asked Bob how he does with morphine and he says he doesn’t know. He had it in Vegas, I say, and he seemed to do just fine. Working alongside Dale and Fran, all-purpose handyman Norman installs a puff tube call light; it can be adjusted with a gooseneck to rest on one of Bob’s teeth. We arrived in RTC2 for over two weeks ago. Why has this taken so long? *** 11a The hubbub starts---time to get Bob out of bed again. Lisa comes to adjust and measure the wheelchair; she is ordering padded arm troughs to better support his broken arms. Michael sets the locks on both the chair and bed. Jodi comes to talk about how well Bob did yesterday sitting up--physically and cognitively. Bob makes a joke: yesterday, Jodi had to be Jacque for an hour. He tells me he is worried today will be a repeat of yesterday: he got tired and was feeling nauseated, which was unfortunately during the time the nurses were doing shift changes and lunch. It was a full 30 minutes from when he asked to be laid down to when he was back in the bed. Don’t want a repeat of that, he says. In addition, he is still fearful of the chair-to-bed transfer. Please don’t leave, he says. Be there the whole time until I get back in the bed. Monday, his first day up, 45 minutes. Next day, 1:15. Yesterday, 1:30. Today they’re shooting for a full two hours. Michael: Do you need suctioning? Are you OK? Jacque, come over and help. Time for you to start learning this. I go behind Bob, one knee on the bed. Michael blocks front with his knees. Fran holds the slide board at the ready. Each slight movement puts him in agony. BL’s face is a contorted mask of pain. Where does it hurt? Michael asks, alarmed. My arms, Bob says, my shoulders, my back. We readjust his arms and attempt the next move more smoothly. Bob’s brows knit together and his mouth opens in a silent howl. Stop, stop stop, I say, can’t we get him something? Listen, Bob has a phenomenal pain tolerance. Stoic beyond stoic. If he looks like that, he’s really suffering. Just finish, Bob mouths, be gentle. So we do. It takes a few minutes in the chair before his breathing calms down, before he can open his eyes. I can’t ever do that again, he says. Never again. *** BL, I say, do you want me to read you some emails? Sure, he says. Just don’t stop talking. I haven’t been able to do this much, most of these poured in during the Vegas period when he was heavily sedated. I start with the GetWellBL folder, which contains 671 messages. Let’s start at the beginning. October 28, 2002. I read, explain and edit as necessary. *** The two student nurses walk in. In light of the painful transfer, the doctors have ordered two Fentanyl transdermal patches, 25 micrograms/hour, one on each shoulder. *** Mamtesh and Diana walk into the room. You speak some Spanish, right? Can you help with a translation? I have no idea how they’d know this; I don’t remember mentioning it. To tell the truth, I speak a shameless bring-me-a bowl-of-posole-please-change-the-pillowcases-weekly kind of Spanish. But as long as everyone accepts my limitations, I’m game. They want me to translate surgical consent for the mother and father of a patient a few rooms away from Bob. I walk into the room and around the curtain. The poor man, an impossibly large head on a small crumpled body, wide-eyed, still in his street clothes. He can speak a bit through a valve but it sounds very mechanical. I introduce myself to him and his parents, apologizing in advance for my Spanglish. I quickly scan my internal dictionary for some of the vocabulary I might need: throat, speak, surgery. The doctor is young, intense, in a hurry. His manner isn’t exactly impolite but he speaks to me as if I were just another lowly hospital employee. Tell her that her son’s vocal cords have been damaged; one is straight, the other is off to the side. They can’t touch. I take a deep breath and jump in. Su hijo, sus cuerdas de voz, uno esta bien pero la otra esta al lado. Las dos no pueden tocar. We want to inject something through the mouth that works for 4-6 months, the doctor says. After that, he’d be looking at another surgery Los doctores van a usar un inyeccion para arreglar las cuerdas de voz. Va a servir por quarto o seis meses solamente, despues su hijo va a necesitar otra surgeria. Tell them about the possible risks, the doctor says: bleeding, infection, poor response to the anesthesia, damage to the teeth. Uh, this is tough. El doctor cree que no va a haber mucha sangre, ni peligro de infeccion, y…y…su hijo va dormir muy bien durante la surgeria, uh, no hay mucho peligro de la anestesia. Hay poquito peligro de hacer dano a los dientes. Wow, that was lame. We also want to enlarge his trach a bit so they can get more tubes in, the doctor says. Tambien va a engrandecer el …uh…el hoyo en la garganta para que su hijo respire mejor. Wait, I ask the doctor. So he can breathe better, or so you can stick more tubes in? More tubes. Lo siento, quieren engrandecer el hoyo en la garganta para que puedan introducir mas tubos para ayudar a su hijo. Ask her to sign on all the places with an ‘x’. El doctor pide que Ud. firme en los lineas con la letra ‘x.’ I throw in my own little editorial comment to the parents about how I can’t believe they can’t find a REAL translator, this being SAN JOSE and all, making sure to exaggerate the “ho” in Jose. Como es que no tengan alquien para traducir en este edificio? Dios mio, estamos en SAN JOSE. Claro que un gran porciento de los pacientes va a hablar espanol. The father nods and laughs. The doctor frowns at me; he does speak a little Spanish and knows I’m showboating. That’s all we need, the doctor says, and I’m dismissed. *** Diana stays with Bob while I do the translation. When I come back, she says: he kept asking for you, kept asking how long you’d be gone. Bob has now been up for 1 ½ hours. Keep reading emails, he says. Keep reading to me. Finally he’s had enough. But they try to push him even further. Are you dizzy, Bob? Is your vision failing? No, he says, I’m just tired. A little longer then. Should I keep reading emails? I ask. No, he says, just talk to me and keep talking. Don’t stop talking. *** Bob says he can’t take anymore. Thankfully, I don’t even need to leave his side to flag down a nurse. The puff tube doesn’t quite make it to Bob’s lips in his wheelchair, but I can stand up and blow it, so I do. Lots of nurses come to assist with the transfer. Mamtesh takes the lead. Stay close, Bob says to me, please stay close. The arms still pose a problem. I hold one, Diana holds another, Mamtesh leads the lift. Fran, who is pregnant, helps a bit. It goes smoothly, by torture standards. Bob is settled back onto the bed. That was great, he says, relieved. Great. *** Then a bath, pin care (both arms unwrapped and wrapped) and a breathing treatment with both Albuterol and Mucomyst, which smells like rotten eggs. Fran, who is pregnant, notices it first. Bob falls asleep, exhausted. It is 2:15. Speech Therapy isn’t scheduled to come until 3. 45 minutes of no molestation would be nice. At 3, Kelly (P/T) and Lata (RT) start Bob’s Passey-Muir trial. Placing the valve sets off a fit of coughing. Lata suctions the lungs on one side, I suction Bob’s mouth on the other. Suction, suction, a bullet of saline, use the coughalator, suction some more. Bob is terrified. I can’t breathe, he says, I can’t get any breath. You’re OK, Bob, Lata says, and she keeps working. Kelly stands by, alarmed at Bob’s high heart rate. She waits to see if things will calm down. Finally, after 5 minutes, he can breathe again. They decide not to use the valve. Bob is too shaken up. I ask Lata to save the next trial for tonight when I can bring Simone and Graham to hear their Dad talk. He finally talks to me. Jacque, he says. Go home and be with the kids. Come back later. And, thus excused, I do. From jacque@oz.net Mon Dec 16 17:32:45 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Mon, 16 Dec 2002 09:32:45 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/13 Message-ID: <16234.66.166.17.192.1040059965.squirrel@www.oz.net> December 13, 2002 Kids go off to school. An hour or so later, Carly comes home. She and the 8th grade counselor have mutually decided a mental health day is in order. For which one of them, I’m not sure. We formulate our plan and head toward VMC. We pack a portable TV/VCR combination. Simone gathers her favorite videos to watch in Dad’s room. We drop Carly at a movie near the hospital; today’s intellectual offering: The Hot Chick. Next stop is Target for an electric razor. It is pouring. Simone keeps chanting “I’m a Seattle baby, I don’t mind the rain!” We carefully navigate the crowded parking lot and dodge the bell ringer in front. Inside, lots of inexpensive non-essentials—more specifically, a decorative display of Norelcos. No longer a choice between a few sledding Santas, there are 15 or so models from which to choose. Each one is just $10 more than the one before, ranging in price from $40 to $190. What are you worth, Dad, $50 or $150? Let me see… how many Little League games did you miss? There appears to be a James Bond tie-in :“Just like the one 007 uses in ‘Die Another Day’.” I pluck a middle-of-the-line Braun razor off a different shelf. Pierce baby may be OK prostituting himself for product placement but I still need to respect myself in the morning. We arrive to find Bob back in bed. Sorry we missed your time in the chair, BL. How were the transfers? I ask. Fine, he says. They were fine. Simone settles in with Snow White and a pack of Oreos. Later, Speech Therapy arrives. Coughing and elevated heart rate cause them to skip today’s Passey-Muir trial. This is too bad…Simone wanted to hear her Dad speak again. Just the night before, he’d worn the valve for a few minutes, and she and Graham heard Bob for the first time since he left for Vegas. Last night, BL said, “Hi, Mony Mony,” and Simone cried out “Daddy!” Vital stats show that his temperature is up around 101. They pack his feet, groin and armpits with ice. Are you worried about staph again? I ask the nurse. His fever is high and his urinary output is down, she says. It could just be fluid depletion. The IV, which was pulled just a few days ago, needs to go back in again. Carly calls. I’m wet and cold, she says. Can you pick me up early? So we leave BL but I promise to come back after dinner. *** I pull up in front of the movie theater. Carly gets in. How was your movie, Miss Q? It was SO SAD. Really? Yes, so sad. Sad? I ask. A Rob Schneider movie? She guffahs. No, MOM, I saw Far From Heaven, you know, Julianne Moore? Oh. Now, I'm pretty sure we'd agreed on The Hot Chick, so maybe Bob is right about her robbing us blind. We arrive home. Graham walked from school, and is playing on the computer. His jacket and shoes are out on the patio in the pounding rain, if they weren’t sopping wet before, they are now. *** Later, I go back alone. The razor has been charging all afternoon and I’m raring to go. Bob insists his beard is too long for an electric. Lisa, his nurse, agrees and pulls out the equipment to shave him. We soften Bob’s beard and moustache with a warm washcloth. Lisa then rubs in Colgate shaving cream and prepares to work with a hospital issued disposable razor. She starts on one side and I watch, massaging Bob’s scalp on the other. If I stop, he says “Please pet me some more.” Good dog. We switch sides and Lisa continues to shave. I’ll save the moustache for you, she says. *** Two nurses come in, one male, one female, one to place the IV, the other to draw blood for fungal, anaerobic and aerobic cultures. Do you have feeling in your arms, Bob? the male nurse asks. A little? This is going to hurt a bit, then. They find a good vein on the right bicep. This is right next to where I’m standing. Should I move? I ask. Nah, he says, you’ve probably seen enough pokes. You’re not going to faint, are you? I concentrate on Bob’s face, keeping the IV insertion procedures in my peripheral vision. He has needles in both arms and doesn’t even flinch. Why do you draw from both? I ask. They give me an explanation about staph and fungus living on the skin, but with proper alcohol wiping you shouldn’t get contamination from both arms, something like that. I roughly understand the logic but damned if I can explain it again. They leave with multiple tubes of blood. I step up to shave Bob’s moustache. It feels like threshing wheat. Can you believe it, BL? I say. First time I’ve ever shaved a man. How about a woman? he asks. No! Backpacking? Hey buddy, those secrets stay in the Cascades. Saucy boy. From jacque@oz.net Mon Dec 16 23:14:18 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Mon, 16 Dec 2002 15:14:18 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/14 Message-ID: <3062.209.179.213.202.1040080458.squirrel@www.oz.net> December 14, 2002 Didn’t manage to get to the hospital until 7:20p. Bob was asleep. I tiptoed in and set up my laptop, figuring I’d catch up on my Bobwatch writings. All is quiet for a few minutes, but then Teresa comes in to get vitals. She announces her intentions, then sticks the thermometer in his mouth. Bob opens his eyes. He is turned on his right side, facing away from where I am sitting. The thermometer beeps and is taken out. I see him try to glance back behind him. You looking for me? I ask. Yes. I just got here about 10 minutes ago. I was worried about you, thought something happened. I'll come talk to you after she's done. So Teresa takes the vitals and leaves. I walk over on Bob's right. You look sad, he says, are you OK? I'm fine. No you're not, he says. OK, you’re right, I say. Can I read something to you? Sure, he smiles. I pull over the laptop and read the email I sent out word for word: *** Hello y'all: Just experienced my second San Jose to Palo Alto cab ride in three weeks: this one from Stevens Creek BMW, where we just left the car for repairs. We were driving to drop Graham and Carly off at a movie; Simone and I were going to continue to the hospital to see Bob. Leaving the 280S freeway via the Saratoga Ave. exit at 4p this afternoon, we hit a very deep puddle--I looked in my rear view mirror for cars behind me, and then put on my brakes as soon as I saw how much water we kicked up. The coast through deep water tore the back bumper clear off and stalled the engine. I was able to get the car over to the side on the more "uphill" portion of the ramp before it stopped rolling. I put on the hazard lights and called directory assistance for a tow. It took a while for them to get to us, close to an hour; big tow day given the rain and wind. Lots of brush down on all the freeways and roads. Kids did OK in the car with me; a little bickering, nothing I couldn't handle. A few people rolled their windows down as they drove by to see they could help; I also had two guys in two separate pick up trucks park ahead of me and walk back to see if they could fish the bumper out of the puddle behind me. A San Jose police car pulled up to make sure we had no injuries; he said we needed to be patient about the tow given the number of accidents today. The tow arrived, very nice guy, got the car hooked up and then waded back to discover that the bumper was in multiple pieces and not worth recovering. He towed us to Stevens Creek BMW (less than 2 miles from the off ramp, he didn't even charge us mileage) with the kids and I still in the car. Kinda cool. Information was exchanged, Visa card and keys handed over. Then they called us a cab. So I'll get in touch with my insurance company tomorrow or Monday and report the problem. Looks like I'll need a new bumper and some paint touch-up, plus engine repair if the problem is deeper than simply drying out. When I went to enter the service department information in my Visor, I noticed that today's calendar date was marked : (Deerr-)Lord family flies to Hawaii. This was the Christmas trip we'd scheduled last summer; I contacted the travel agent to cancel it a few days after Bob was hurt. Perhaps I can share the blame with the weather and call this an El Nino-related casualty: http://www.noaanews.noaa.gov/stories/images/winteroutlook121202d.jpg So I'll set the kids up with DVDs here and head back in another car to the hospital. Don't think I'll trouble Bob with this just yet, although I'm guessing he'd have an opinion as to whether to report it to insurance or just pay it myself. I'm worried that he doesn't need the aggravation and will find out soon enough? Take care-- Jacque *** So look at that, I say, I went ahead and bothered you with it anyway. I’m glad no one was hurt, he says. No, we're all fine, I say, just a little frazzled from the forced togetherness. Carly’s mad she didn’t get to see her movie. I told him about trying to walk down the off-ramp the get the bumper. Too dangerous, he says, don't ever do that again. Can you believe it? I ask. Rear end damage due to water puddle? Last time the bumper got hit I didn’t have it fixed, he said. That’s probably why it came off so easily. That's chivalrous of you to take the blame, I say, but really it was just another bonehead J-L car maneuver. Basketball, he says. Yeah, just like the basketball incident, I say. Bite me. *** You look tired, he says. I am, but I’ll get over it. Want to hear about my day? Sure. I then go on to tell him about our terrible/wonderful 12 hours...how a crew of 6 volunteers came to clean our house (wonderful) and how completely bitchy Graham and Carly were about having people help us out (terrible), how whiny and uncooperative they were when we went out for breakfast/mall hopping (terrible), how we came home to a beautiful shiny home (wonderful), how I decided to indulge myself in a nap (wonderful) because some medicine I earlier made me sleepy--- --What medicine? he asks, concerned Muscle relaxants, I say, my back is out. I'm sorry, he says. I'm not surprised, I say, I haven't lifted weights for almost 7 weeks, not since you got hurt. But hey, I'm sorry to bring it up--it all seems kind of petty compared to what you're going through. You need to take better care of yourself, he says. I’m still figuring out how to do that, I say. If I'm not here with you, I feel anxious. If I'm not with the kids, I feel guilty. How am I supposed to balance that? You don't have to be here so much if it's hard on you, he says. I miss you when we're apart, I say, and I worry about you not being able to communicate. It's not so bad anymore, he says, I'm starting to trust the staff. I'm glad. Hire someone, he says. We'll need help anyway after I come home. Really? I should hire someone now? I ask. You need the help, he says. Okey-dokey, I say, let me look at tomorrow's paper. Now, can I finish telling you how shitty my day was? Sure, he says, smiling. --so I took my nap in my shiny clean house, and when I woke up I walked into the bathroom---red smeared all over the sink, faucet, counters, cabinets—like someone had skinned rabbits in there or something. A trail of red to the other bathroom---sink and cabinets smeared there, too. Follow the trail of drops to the dining room, there, on the tabletop, pools of red and yellow paint. Aha! Simone’s been fingerpainting. Thank God, no red paint on the family room rug. But there was red in the dryer where she reached in to get new clothes, some red on some of the dried clothes, some red on her chest of drawers where she reached in to get new socks... And this is a terrible thing to wake up to, especially when you were so excited just a few hours earlier to see your home so clean. So I put Graham to work (grudgingly) on the table. Carly to work (grudgingly) on one of the baths. I scrub the spots on the floor, the drips on the wall, the smears on the dryer and Simone's dresser, and throw both bottles away in the trash can outside. Simone cowers in her room, crying, "I'm NEVER going to get to paint again, my mom says she's never going to let me paint again," which isn't quite accurate, I said she should never help herself to paints again, which is different but of course she reads them the same melodramatic way. And then, BL, the drive to try and see you, the car incident, the waiting in a steamy-windowed, rain-streaked windshield, barely pulled over enough to the side of the off ramp, wiping the inside of the windshield with Simone's cotton jacket, finally the truck pulls up, and its flashing, strobing red and yellow lights as seen through a rain streaked windshield, think about now a movie director would do an accident scene, rain, lights, fogged windows...it was all there. And the kids getting out of their seat belts and fighting over who gets the pen and notebook and making strange irritating sing-songy noises and pushing the voice buttons on their Simpsons watches that I bought only yesterday. And getting out in the rain to talk with the tow truck driver, and I can't straighten out my wheels because I can't start the car, tow truck driver is REALLY NICE by the way... SO we ride in the car while he tows us, pretty illegal, I think but it's only a few blocks away and the kids sit in the customer waiting area and eat stale bagels with cream cheese while watching a Danny Devito/pregnant Arnold Schwartzenegger movie. I talk with the ass't service manager guy, he has to fudge some of the details on your car because the computers that have that information go down at 5p on Saturday for maintenance and backup.. ...and we get the cab and finally we're home. I am now triply anxious...40 bucks dropped on a cab ride, all the damage to the car, AND I still haven't gotten to see you today. So now I'm here, and I'm sorry I can't be more upbeat for you. You're fine, he says, go home and sleep. Sleep in. Take care of your back. I'll come back in the morning. What time? Eleven? I ask. Sounds too early, he says. I said to sleep in. Noon? OK. But please call if you're going to be late. From jacque@oz.net Tue Dec 17 08:14:12 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Tue, 17 Dec 2002 00:14:12 -0800 (PST) Subject: [Bobwatch] No Bob Report 12/15 Message-ID: <16635.66.166.17.192.1040112852.squirrel@www.oz.net> From jacque@oz.net Tue Dec 17 08:16:46 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Tue, 17 Dec 2002 00:16:46 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/16 Message-ID: <16638.66.166.17.192.1040113006.squirrel@www.oz.net> December 16, 2002 Simone and I arrive close to 11a. Bob is already dressed in his pajama bottoms and ready to be up in the chair. Hold my arms, he says, hold them the entire time I’m being moved. This poses many logistical problems. Think Twister. Upright. With strangers. Ick. But I obediently kneel on the bed and lean precariously at the waist to keep his arms level. Anything for the beau. Once Bob is settled in the chair, Michael tries to show me a weight shift. I do believe this chair has tilt and recline features, he says, but you’ll want to learn the technique. I’ll demonstrate. Jacque, hold my arms, Bob says. He takes Bob’s feet off the leg rests one at a time and sets them on the ground. The leg rests are pushed to the side. Blocking in front with his knees, he slowly leans Bob forward, until his nose is a few inches from his thighs. Normally, Michael says, we would just let the arms dangle forward, but since your husband’s are broken, you’ll need to hold them. More Twister. One and a half minutes in this position. You OK, BL? Yes. Should I count to 90 aloud? I whisper, inches from his right ear. No, he says, just keep talking. After the weight shift, we are left alone. Simone is watching a video. After an hour, Bob looks woozy. They’re aiming for 2 ½ today, I say, hang tough if you can. Talk to me, he says, just keep talking. Fran comes to administer some medicine through the PEG. Some accidentally spills on his left arm and its supporting pillow. She has me hold Bob’s arms while she changes out the pillowcase. She then sets to unwrapping and pin care. *** Simone and I hurry to get lunch while Fran has Bob occupied. I buy sushi and bottled water, Simone wants a hot dog and chocolate milk. She insists the vending machine hot dog is better than the cafeteria one. The change machine gives me $5 in quarters. My pants have no pockets. So I’m juggling sushi, microwaved hot dog, bottle, carton, a straw and two packets of ketchup. Men, check your wardrobes. $20 to the first guy who can find a pair of pants without at least one pocket. (Sweatpants don’t count.) Stone tablets show this misogynistic design feature got its start back in biblical times, Eve flirting with the snake in the Garden of Eden: Does the apple in my pocket make my butt look big? We’re back. Bob’s been up for two hours. That’s enough, he says. Keith comes and does the transfer single-handedly: he’s a big guy in K-Swiss slip-ons. *** Speech therapy comes at 2p. They suction Bob repeatedly before placing the Passey-Muir and this time, just for kicks: they leave him flat to speak. Evelyn, the pulmonary specialist, explains that it’s easier for him to breathe that way, although the ultimate goal would be for him to speak sitting up in the chair. One day at a time, she says. Bob notices it’s easier to talk today. I’m glad. Simone and I both enjoy hearing his voice, even if only for 20 minutes. Jacque, he says, talk with OT about securing my arms. They may have to put me in full-arm casts, or stabilize them with towels and a wrap-cord, or tape them to my body. They are the only thing that hurts during the transfers, and I’m miserable every time. We need to do better than this. Well Bob, Kelly says, that’s VERY good problem solving. I resist the urge to smack her. *** Bob is coughing. I suction his mouth. Simone needs help with the volume controls on the TV. Bob asks for me to stay near to help with his arms during RT. Simone pulls on the hem of my shirt: Mom, I really need to go to the bathroom. Mom, can we get Oreos from the taco truck? Wait, honey, until a nurse is free to be with your Dad. Why do you always have to help Dad? she asks petulantly. And Bob: Just keep talking. Please keep talking. Don’t stop talking. I’m all talked out. Hard to believe, but true. Anyone who’s spent more than 15 minutes with me knows my highly verbal nature. I can converse with anyone…about damn near anything. But the key is give and take: true discourse needs a catalyst. I lack the oratory skills for monologue. But I try. I talk about emails I’ve received, what the kids are doing, holiday preparations, the meals that are delivered to us… *** By 3p, I’m frazzled. My phone rings again and again…I know it’s Graham calling to announce his arrival from school. Each time I pick it up, I can’t hear a voice on the other end. Cell hell. And Simone won’t stay in the room; she’s found a new friend in Deanna, a 6 year old whose mother is hospitalized with MS just a few doors down. So amidst the suctioning, the ringing phone, the high pitched sounds of my daughter having fun out in the hall…I’m coming to a boil, and it bubbles to the top. I think: I hate my life. And it’s only going to get worse. I say it out loud. I hate my life. I’m sorry, Bob says. I have to go, BL, I say. I can’t control Simone anymore. I don’t think I’m going to be able to come when she’s not in school. He hears the quaver in my voice. Don’t be too hard on her, she’s only three. Oh, I’m not being hard on anyone, I say. I absorb everything. *** 8:45p Rick mixes up tonight’s cocktail in the turkey baster---Coumadin, Adivan, Tradozone. Bob’s coagulation factors are a little high, the Coumadin dosage was lowered, then increased again. Guess what new medicine I got this morning? BL asks. You mean they found something ELSE to give you? Yeah, something new. Guess. He smiles. Uh…let me see…an antidepressant, I hope? Yes. Zoloft. God, it’s about TIME, I say. You’re 50 days into this and only now they’re thinking you might be depressed? Rick laughs. Zoloft is pretty standard for SCI patients, he says. You should have heard me in Vegas, BL. I was berating the psych guy for not putting that stuff in the drinking water. I see. But you know what, young man, amazingly enough you don’t seem depressed to me. Do you think you’re depressed? No, he says, because of you. What, I ask. You mean compared to me you seem upbeat? No, you’re the reason I’m not depressed. He’s right, you know, says Rick. Oh BL, I say, you always know the right words to keep me coming back. I hope so, he says. From jacque@oz.net Thu Dec 19 20:08:21 2002 From: jacque@oz.net (Jacque Deerr-Lord) Date: Thu, 19 Dec 2002 12:08:21 -0800 (PST) Subject: [Bobwatch] The Bob Report 12/17 Message-ID: <18780.66.166.17.192.1040328501.squirrel@www.oz.net> September 17, 2002 The day starts out busy. I take Simone to preschool and continue to the hospital. I am surely up over .08 BAC (befuddled automotive condition) driving under the influence of multiple cell phone calls— 1. To my friend Karen G: can Simone come home with you after preschool? 2. To my insurance company to finagle the BMW claim. 3. To an LCSW to set up counseling for my children. 4. From my poor sister Lisa who told me the story of rolling her SUV down a steep mountainside the day before. Luckily, they lodged in some vegetation after two rolls or it would have been farther. She and her two daughters escaped with just a few scratches. Yes, Deerr Sisters #1 and #2 are experiencing a siege of car misfortune this week. Let me send out a big heads up to Laurie (Sister #3) in Southern California: please don’t feel the need to outdo me (mini-aggravation) or Lisa (freakin’ scary incident). As I pull into the hospital parking lot, my phone rings anew: 5. Graham’s teacher; he is having a hard time, could I please speak with him? Our conversation cuts in and out in. AT&T cell coverage near the hospital is abysmal. My dream scheme: an algorithm that credits me back $1 for every time I have to say “Can you hear me now? How about now? Is this better?” I do a U-turn in the lot, heading back on Moorpark toward 280. I stop in a church parking lot to complete the call. Graham is sad and needs to be with me and Dad. I’ll be there in 45 minutes, I tell him. I return to VMC, park, run up to RTC. I kiss BL and deliver the news: I am here just like I said I would be. Sorry, though, gotta go, just got a call that the bunny’s having trouble at school. Even paralyzed, BL’s a good dad. Go get Gray, he says. You two can come back later. I do. And we do. *** Gray and I return to the hospital. BL is up in his wheelchair, alone in the room, puff call tube in his mouth. I push it out of the way and kiss his cheek. Hey there, I say, we’re back. How did the transfer go? Very painful, he says, my arms, again. I notice his face is covered with fine beads of sweat. Let me wet you a washcloth, I say, turning to the sink. Graham comes over to say hello to his Dad, and then sinks into a chair to read a book. I feel uneasy being with Bob when he is up in the chair. He looks woozy and ready to fall over at any time. He is safely secured upright, though, a Velcro strap around his chest, a buckled one belting his waist. The physical exertion is quite obvious; his breathing labored, his arms trembling. It is hard work to be up after so many weeks horizontal. His eyes flutter open and closed. It exhausts him to speak. He asks me to talk, to keep talking, to not stop talking. I am running out of material. Then, an action item. Please rotate my shoulders, he says, slowly. Gently. And tell me where you’re touching and what you’re doing. OK, I say, going to his right side. My left hand is holding your triceps, and my right hand is supporting under your forearm. I am starting to move your shoulder in small counterclockwise circles. Does that hurt? No, he says, it feels good. Should I make the circles bigger? I ask. In a bit, he says. So I continue. In a few minutes, I reverse to clockwise small circles and then slowly enlarge those. Will you do the other arm? he asks. I move to his left side. The wheelchair is locked. The bed is locked. It takes some fussing and searching around before I determine how to move the bed. I squeeze into the tight space on his left side. Hospital rooms are scaled for pygmies. I repeat the process: gently lifting, supporting in two places, describing where I’m touching and what I’m doing. When finished, I carefully rearrange his arms. Your wrists are 6 inches apart on a pillow on your lap, I say. Your forearms are on the wheelchair armrests. Your elbow points are off the armrest. Is that comfortable? Yes, he says, but please watch when I cough. Don’t let them fly off. I will. How long have I been up? he asks. One hour, five minutes. Hang in there, I say. *** Will you wipe out my ears? he asks. I get some wrapped swabs from the table and begin on the right side. Not too deep, he says, and be sure the cotton part doesn’t come off the stick. BL, I say, honestly. A hospital-supplied swab with a loose tip. I don’t think so. These cost like, what, ten bucks each? Get another clean one, he says, put that one in the trash. I’ve barely used this one. Get another one. O----kay, I say testily. I’m done here. Whatcha reading, Graham? I throw the remainder of the swabs in the trash. J-L, Bob says from the chair. Yes? Please don’t take offense. *** I worry about my short fuse. Maybe I’m not cut out for this caregiver stuff. *** Bob wants me to talk. I talk about what the kids are doing, how our Christmas preparations are going, how we wake up every morning to processions of ants that manage to find each small kid-dropped crumb on the dining room floor. Just like when I was growing up in L.A., I say, they always come indoors when it rains. You should call Ed, Bob says. He can help you with that. I’m not going to bother the landlord on account of a few little bugs, I say. I can handle this. I just douse ‘em with the orange cleaner Ellen bought for me in Vegas, stops them dead in their tracks. Smells great, too. Your call, he says. *** Hmmm. What to talk about, what to talk about. I resort to self-pity. Hey BL, I say, the Bush School is blowing me off. I’ve both sent email and called requesting information on how to re-apply the kids for next year. No response to either. I’ll try a third time but it looks like that option may not work out for us. A question, I say: if Jacque falls down and screams in the forest but no one’s there to hear it, did she actually scream? She did, Bob says, and I heard it. I was listening for it. *** Simone and I come back after dinner, arriving at 7:45p. He’s kind of sleepy, Shari says, been dozing the afternoon away. Guess the time up in the chair really wore him out. Now, Bob always says I should wake him up when I come, but maybe this time… …and his eyes open. His Master’s Voice? I go over to give him a kiss. His eyes are open wide, the most enormous pupils I have ever seen. Hey BL, I say, it’s kind of creepy. Your pupils are so big, you look like Mr. Sparkle in that Simpson’s episode. Really? he says. They changed some of my medications today. Higher painkiller dosage, and a muscle relaxant. Hang on, I say, and I go to the bulletin board where a flashlight in hanging. I apologize for overstepping my bounds and flash it quickly in his eyes: no real change. He cringes. OK, that’s weird, I say, I wonder if the new medications are affecting your response time. Let me go ask the nurse. I step outside. Shari, I say, do you have any idea if Bob’s new medicines can cause his pupils to dilate? They are much bigger than usual---and I usually come at this same time of night and the room is usually lighted the same way. She comes in to check Bob. Yes, they are big, she says, but it IS dark in here. I look at her pupils. They are small. Shari, I say, your pupils are small, and ook at mine. Bob’s are five, six times the size. I’ll ask the nursing supervisor. *** The nursing supervisor comes in: yes, she says, they are big. Then she asks me: How do they compare to what you expected to see? They’re huge, I say, enormous. By this time, with increased wakefulness and people in the room, Bob’s pupils have come down a bit . Still, though, alarmingly big. I don’t like this, she says, I’m going to call the doctor. She steps out. Hey BL, I say, look at all the fuss I caused---just by complaining about your sluggish pupils. *** A few minutes later, Dr. Wun shows up. She’s the resident on call. She looks at Bob’s eyes and then holds up two fingers. Can you see these? she asks. How many fingers am I holding up? Bob can count them with his right eye covered, but when she covers his left eye, he says: It’s all black. I’m not seeing anything. She checks him out with a flashlight and concurs; is there any history of problems in that right eye? she asks me. Well, I say, I wish I’d brought my notes from home, but I’ll tell you what I know: On October, 29, two days after he was hurt, one day after major spinal surgery, he complained of vision problems in the right eye. That same day he was intubated for breathing difficulties and put on Diprivan. Based on his comments and looking back over the MRIs and CAT scans they took when he was first brought in, they suspected a vision cut on the right side caused by PION (posterior ischemic optic neuropathy) or possibly left occipital infarct. He was seen several times by ophthalmology in Nevada but they could never do a definitive exam on account of his non-verbal and heavily sedated state. I’m going to call the ophthalmologist to come see you, she says, and leaves the room. *** BL, I ask, alarmed, is that true? You’re not seeing out of your right side at all? No, I can’t see anything he says. And that’s a change. This morning I knew I could see out of both eyes because I checked like this (alternates closing one eye, then the other). But now the right eye sees only black. Oh sweetie, I say, I’m so sorry. But try not to worry, let’s wait and see what the ophthalmologist says, OK? My eyes are stinging, he says. Would you get a wet washcloth and wipe my eyes? *** I’m scared, he says, blinking quickly. Of course you are, I say, me, too. Now would be a good time for a fast-acting antidepressant, he says. BL, I say, try not to worry. I feel so stupid saying that to you, young man, because I’m worrying, too, but look-- it won’t change things. Let’s see what the ophthalmologist has to say. I don’t want to be blind, Bob says resolutely. I can’t live blind. Of course you can, I reassure him, look, it wouldn’t be perfect, OK, it would really suck, but you’d still have your hearing, still have your brain. Nothing wrong with your brain, right? But you’re not going to be blind. It’s just the one eye that doesn’t see now. And we don’t even know if that’s permanent. You know I don’t use my right eye, either, so think of it, BL: we’d be a matched set. Two salt shakers, and no pepper. You, too, will now have an excuse for crappy parking. He smiles, but I wish I could take it back. He’s not going to be parking anything anytime soon. Simone is watching a Madeline’s Christmas video in the corner of the room, little girls singing with faux French accents: Never give up on wishes…. *** Shari comes in with meds: Neurontin and Trazodone--the doctor says to wait on the Coumadin.. Hey BL, I say, using my best “Oooo, you’re gonna get it” voice, Coumadin is