Blog at http://drpeg2003.blogspot.com/

May 24, 2006 (1:37pm)

Well, I guess they never promised speed when it came to the delivery of those electronic messages here at Shepherd. A bunch were delivered to Gary last night (Tuesday). Thanks to: Ronnie Levy, Mirko, Donne, Bill Kelly, David Fremlin, and Janet and John. We also got snail mail: a joint card evidently written during a mini-War Eagle from Janet and Jack Rogers, Jane and Jack Brown, Sam and Diane Young, Margie Fitzpatrick, Pam and J.P. Holmes, John Henrichsen (sorry if I mispelled that John – I can’t remember exactly how to spell it and I can’t read your writing ;-)), Donna Bennett, and Cathy Colquett. And of course another card from Gary’s mom :-) This time she didn’t send a picture, but I forgot to mention that Gary’s cousin brought one. It was really cute, from when Gary was about six years old, is his guess, taken on the farm Gary grew up on. Gary and Bob and their cousin John are in the foreground, Grandpa Groteleuschen and a milk pail behind them, and behind them, some cows.

More mail just came in: a card from Beth Fletcher. And a Lucky Bamboo plant from Janet and John!

Back to the medical stuff. On Monday after the conference with the doctor Gary had his first session on the mat in the gym. First came learning how to balance on his spine – remember, he no longer has abdominal muscles he can recruit for any of the things I tell you he is learning – most of us would no doubt unconsciously recruit ab and leg muscles to help, whereas for him everything below nipple level is dead weight. In balancing, head placement becomes very important. If you’re falling forward, you need to lean your head backwards, etc.

So he practiced sitting, and reaching from a seated position without falling over, and also how to go to and from a sitting position to a leaning back position (supported by a wedge).

On Tuesday he learned how to roll from lying flat on his back over to his side. Not so easy when you don’t have leg or abdominal muscles to recruit. You have to swing your arms vigorously from the side away from the direction you want to go in to the side you want to end up on, and you do that a few times to build up momentum (one, two, three!). You also have to tuck your chin to your chest and use your head to help throw your weight in the direction you want to go – this is definitely not the time to feel self-conscious about how your body is moving. I could tell by the look of intense concentration on Gary’s face that this rolling business was not an easy task. But he actually was successful at it fairly quickly – I was impressed, and Gary was quite pleased.

Next came weight shifts to the side – so I don’t have to be with him to lower the back of his wheelchair every thirty minutes for the rest of our lives ;-). In this procedure he learned how to manage the wheelchair so he can lean way off the side of it to make sure his butt lifts off the seat of the chair. This is to make sure he doesn’t develop any skin sores on his booty. He has to hold that position on each side for a minute, and must do this every thirty minutes he is sitting. There is an alternative kind of weight shift where he would use his arms (triceps) to lift himself straight up from the chair (balancing on the arm rests), but he isn’t strong enough yet to hold his body up in the air just balancing on his hands for anywhere close to a minute (can you?).

They then showed him how to stretch his legs using looped pieces of cloth. It will be important for him to maintain the flexibility in his legs for postural considerations. I asked if there was anything that could be done to maintain the muscle mass of his legs, or if they would just atrophy. Evidently if a doctor approves, Gary can be put on a bike where electrodes would go to his legs and stimulate the muscles to move so he would be “riding” the bike. They didn’t make it sound like this was standard for patients in his situation to do, so we’ll see about that later. They definitely stressed the flexibility, tho.

After this (an hour’s worth of work), the therapist asked how tired Gary was on a scale of 1 to 10. 1 meaning, he could do this all day; 10, meaning he needed a nap. Gary said “9.” Fortunately it was time to go. In fact, we had gone over the allotted time, and Gary was late for the skin wound class. We caught the tail end of it – full of gross pictures of bed sores on people. Then it was time for lunch. I think the order of events should have been changed. (I’m sure the intent of that class is to scare people with what could happen if they don’t take care of themselves, and at that they succeed eminently.)

In the afternoon on Tuesday Gary had another session of therapy. The therapist asked how he felt. Gary said he was almost recovered from the morning session. The therapist smiled mercilessly. The tasks were harder. Gary practiced going from laying on his back to the roll to the side position to sitting up. The sitting up part involves a lot of technique and strength – you have to place your elbow to the side just so, and then walk your upper body around with it until you’re kind of folded in half to the side, then push yourself to a sitting position, which again involves hand and head placement so you don’t lose your balance and fall over. The therapist had to help Gary on this – he wasn’t yet able to do this on his own. He also practiced scooting – but not too much because of the bed sore. We also watched someone else practicing a board transfer, where the guy placed a little board from under his butt to over to the matt, then he scooted over on it. When Gary can accomplish that, he won’t have to be airlifted on that hoist appartus ;-) Unfortunately that sacral flap surgery means he won’t be able to scoot for a year (!) afterwards. Unless and until he gets strong enough to lift his body entirely off one surface to another, we’re not sure how he is going to be able to do transfers – I certainly can’t be lifting him. Someone is going to talk to us more about this. I know they had mentioned a mechanical hoist at Birmingham, but it’s still a two-person operation, one that requires more physical ability than I have, because of my back. So I don’t know if this means we’ll have to spring for an electrically operated hoist or what.

After that therapy session, Gary was ready to go back to the room, but they weren’t through with him. He was supposed to wheel around the place for another hour, taking breaks as needed. After forty minutes he said that was enough. It was enough for me too, since I had just started having a migraine aura and the floor was tilting beneath my feet. He went back to his room for a nap, and I went off for a massage at a place I had seen a couple blocks from my apartment. In the same building is a rolfer, an “energy work person,” a chiropractor, and an acupuncturist, in case I want to do a sampling :-) . In the evening I had a brief phone conversation with Gary’s cousin, who gave me choices from her books-on-tape and her DVDs, and a phone conversation with my older sister. After eating, I returned to the hospital just at the time cousin (cousin-in-law?) Helen was about to leave Gary’s room. She is letting us borrow a CD player along with her book and movie selections, so we are starting to line up our entertainment for when Gary can’t get out of the bed again.

So that was Tuesday. I got up a little early on Wednesday cuz Gary had run out of clothes to wear so I had to do laundry (I can hardly wait for him to become independent ;-)). I knew the volume of water had been low in my faucets in my apartment, but I didn’t anticipate how low it was in the laundry room. With the merest trickle coming out, I was afraid it would take a couple hours to fill the washing machine. Fortunately it didn’t, but the dryers sucked too, and since I didn’t want to spend all day there, I removed the clothes from the dryer after a half hour and hung them around the apartment. Next time I’ll use the washer and dryer provided for the patients on Gary’s floor; I may even try to sneak some of my own stuff in with his. When I got to Gary’s room I found he’d missed his “Alcohol and Drug” class (how spinal injury affects the ingestion of such). Not that he was all that dismayed by that (he will have to make it up), but the reason he missed the class is because his replacement chair hadn’t come. When he first got a wheelchair on Monday, it was definitely meant to be a temporary one until they had a better idea of what he needed. He got one on Tuesday that was supposed to be better – smaller, lighter, more mobile – but turned out to be worse. He was sliding around in it – it was too big and gave him no support around his midsection, and he couldn’t keep himself upright in it. So he was supposed to get another one this (Weds) morning. He didn’t want to miss his OT class, so I went to find his therapist to see if they could at least get the first chair he had been in so he could come to the class. She told me she would find a chair for him. When she came about a half hour later, it was with his new chair. This is not the one he’ll take home; when that time comes close, he’ll go to a seating clinic and they’ll customize one to him. The chair she brought is still one of the ones they pass on from patient to patient at the hospital. It is still too big for him, causing him to catch his arm on the bars that support the back when he wheels it, but at least it has “wings” that circle around him below his armpits and help keep him centered in the chair. He said it was significantly better than the one they had him in yesterday. But actually he didn’t spend much time in it then – I had brought up that Gary wanted to practice proning, which they want him to do after the sacral surgery if at all possible, and she thought this would be a good time for it. So she brought a wedge and a face cradle for Gary to try. The face cradle is similar to the type massage therapists use. If you are not familiar with that, picture a padded toilet seat, where your face would go into the hole part (okay, that is probably not something we’d like to picture ourselves as doing, but at least it describes it pretty well). Using the wedge instead of the cradle seemed more comfortable for Gary. The wedge goes under his chest, and he either would support his weight on his elbows if he wants to read, or he would put a pillow under his forehead to rest his head. He said it seemed pretty comfortable, though to me it didn’t look it. I can’t imagine laying like that for hours on end, but we’ll see what happens when the time actually comes. The therapist gave him some exercises in that position to stretch his shoulders, which have always been very tight, and to strengthen the muscles in his back (like his traps), both the strengthening and stretching intended to help him maintain that prone position.

After that session was a two hour break for lunch and “whatever” until his next scheduled activity in the early afternoon. This they called a “group activity,” and when we had first asked about it, they’d made it sound like fun – a scavenger hunt or some kind of outing. Some people scheduled for this group activity started playing pictionary. Gary was told to lie on the mat, another guy next to him, and the two of them started to do stretching (or rather, to be stretched). The area of the gym where Gary was was pretty crowded and noisy, and it didn’t look like there was room for me (besides, I’m not a game player) so I slipped off to work on the blog. When Gary came back, he looked worn out – definitely not like he had been spending a lot of time playing pictionary.

I asked him what activities he had gotten to do. “Some group activity,” he said with his tongue hanging out. “Me and that other guy got to do weights for an hour and a half.” I asked if he’d had to do that the whole time (they take breaks, of course), and he said, no, he’d gotten to practice going from a leaned back sitting position to a sitting forward position and then back again – which again, is work, because he doesn’t have his abs to help with this – it’s balance and hand and arm positioning and upper body strength. They had done this over and over again. Some fun .

And of course he’ll have to start all this over from the beginning five weeks from now after the flap surgery. But I’m glad they’re having him do this rather than just languish, and he will know what to expect next time around.

A short time after he returned, Jamie, from my critique group, arrived. She had come to Atlanta to visit with us and to whisk me away for a short while. So she met Gary for the first time and acknowledged that he did indeed exist (having been skeptical of that fact for so long; Gary brought that up and she told him she knew he had to exist when she and others in the critique group found me on the floor, crying, at Paneera’s (the restaurant where we hold our meetings) – that was when I first got the message to call the emergency room and got the news of Gary’s accident and they told me he had a severe spinal cord injury and was paralyzed nipple level down; Jamie said no one was that good of an actor to fake my reaction (I didn’t tell them but I was petrified Gary was going to die)). After a short time she and her son and I left to find a restaurant. Her son, Jesse, is an interesting character (better not let him read this, Jamie). He’s just turned ten and has the energy of that age, but his talk is atypical (in my limited experience) – full of scientific facts about animals (they went to the zoo before seeing us), about chemistry, and about other areas of science, and how Bush is our worse president ever (of course his similes (and he used that word, his mother being an English teacher) were of the type “Bush is like barf” – not that he used the word “barf,” he merely pantomimed the act of upchucking). Such an intelligent young man. At first Gary and I weren’t sure Jesse would be allowed on the ward, having thought we read that no one under twelve was allowed, but I found out from the nurses that all he would have to do is stop at the security desk and answer a few questions about whether he had any infectious illnesses, including a cold. I forgot to tell Gary that, and when I told him Jesse was coming up too, Gary said he thought the boy wouldn’t be allowed. I explained about the security procedures and Gary started laughing. He’d thought that kids weren’t allowed not to protect the patients from childhood illnesses but to protect the children: the sight of all these cripples would scare them. A roommate of Gary’s overheard Gary’s explanation and started laughing too, and they both resolved to be on their best behavior so as not to scare Jesse. We all agreed that when we were ten we probably would have been scared in such a situation. Gary said he probably would have fainted, since he was known to do so whenever they’d shown medical films at his school.

But Jesse wasn’t phased at all, not batting an eye when Gary wheeled over to the other side of the room to do his weight shifts, and merely looking on with interest when Gary was hoisted through the air from his wheelchair to his bed.

Jamie had suggested we go to an Indian restaurant, having the idea I could order a big plate of rice. Through Yahoo we found an Indian restaurant that was only about a mile away, but when we got there we found the business was closed. We found another restaurant in easy walking distance – fortunately, since the $5 she paid for parking was nonrefundable. It’s been a long time since I’ve been to a restaurant – I thought her paying $14 for a plate of roast chicken ridiculously expensive, but Gary told me afterwards it wasn’t. We thought it odd that the waiter kept removing and replacing drinks (Jamie and Jesse’s diet coke and lemonade) and refilling my water when they’d been only partially consumed. The place didn’t have anything I could eat, of course, but I had come prepared, bringing along a container of cooked rice. Fortunately they didn’t say anything about it.

It was great spending some time with Jamie. She left to go back to Auburn soon after we finished eating. I went back to the hospital for another hour, and Gary and I watched more of the Dylan DVD. I like it marginally better than the book, neither of them really giving me a feel for the man. At least the DVD has music, which is why Gary likes the DVD better, too.

I mentioned a little about that day of the accident a few paragraphs ago, and that reminds me. Gary mentioned that he can remember being at the intersection where it occurred, but then there is a gap. He doesn’t remember being hit. The next thing he remembers is being in the rescue vehicle. They found fluid in his lungs and told him they would have to put in a chest tube. They pounded it in just below and to the side of his armpit. It hurt a lot and that was the first time he had the thought he might be in a little trouble. He said he was never really worried, though, until days later, after the second surgery, and the doctors started mentioning things about infections (in the staples, etc), because he knew infections in a hospital were a serious thing.

According to the accident report, however, he wasn’t unconscious as long as the above makes it seem. The reporting police officer claims Gary made the statement at the scene that he never saw the other car (which is what Gary has told me and others). It seemed bizarre that here Gary was lying there with a severed spine and the police officer is taking his statement about the accident, but I suppose that’s standard operating procedure.

Jumping about here – Gary’s splint was removed from his index finger. Yea! Now all he has on it is tape – it is taped to his middle finger for a little extra stability. It hurts to bend it, but that will get better. Even his “good” fingers were stiff for a couple of days after they removed his cast.

Another non sequitur. The other day we were in his room when we heard someone call through the curtain, “environmental services.” I thought that was something to do with temperature control, Gary later joked that he thought it was someone to whom he could complain that he didn’t like the environment here. But it turned out to be someone who emptied the trash and swept the floor. So, they don’t have janitors at Shepherd, they have environmental service technicians ;-).

This morning (Thursday) when I arrived I found out that Gary had had his first shower since the accident. They put him in a special wheelchair that can go in the shower. He felt light-headed, so they had to put his pressure socks back on him, and in addition he wore the chest strap while he bathed himself. Both the socks and the strap help maintain his blood pressure. His doctor told him that the very first time he had had a shower, he had fainted. I assume it was because he hadn’t been wearing those extra supports – ideally, in the shower, they wouldn’t be wearing socks and straps.

We have noticed that Gary always gets cold after they bathe him, and this was true of the shower. So I first warmed him up with hugs ;-), then brought him some hot tea. Soon after that he asked to be put in his chair so he could go to his class, and that’s where he is now, in a class on male sexuality. No females allowed. We had thought maybe I could attend, but they kicked me out ;-). (We can see where other men might not want other people’s female partners to attend. So I will have wait to find out what went on in the boys’ club meeting. ;-))

Non sequitur. In the restrooms at Shepherd they have these paper towel dispensers that you just hold your hands under and the dispenser senses you and out rolls a small bit of paper towel (I always have to hold my hands under there twice because they are too stingy with their toweling). Restrooms are getting so automated these days. Toilets flushing automatically, towels rolling out automatically . . . Of course, such automation in our world can lead to false expectations. When I went to get my massage, I couldn’t figure out where the buttons were to call the elevator to go up to the second floor. The only button that registered as a button had the symbol of a fire chief hat on it, so I didn’t think I should press that. At the top of the panel where I thought the buttons should be, it read “automatic elevator.” So I thought maybe all I had to do was stand in front of that panel and it would sense me and the elevator would come (you’re probably thinking that was stupid, aren’t you? :-)). After a couple minutes it became clear the elevator wasn’t sensing me or reading my brain waves. I heard someone down the hall so I called out, “How do I call the elevator?” “Push the button,” came the reply. “I would if I saw one,” I muttered under my breath. I told the guy I knew this was stupid, but I couldn’t find the button. He came over, and pushed it. It was on the bottom of the stainless steel panel, made out of the same stainless steel, and nearly flush with the panel. Okay, it was round, like a button should be, but there was no “up, down” arrow next to it, and it just didn’t register that that was something to push.

Non sequitur. It is interesting seeing the various spinal cord patients here. Some have quite a bit more functionality than Gary will ever have, and I can’t help feeling a bit, what?, envious? That’s not quite the right word I don’t think cuz it’s not me in the situation. Others we see have C-level injuries, and will have to operate their wheelchairs the way I think Christopher Reeve did, the “sip and puff,” method, blowing through a straw-like device to steer their wheelchairs. We were told they could use similar methods to operate a phone or the TV. If they have the use of even one finger, it may be possible to even drive a car by pushing a button.

But I am glad we don’t have to take advantage of the wonders of science and technology to that extent.

All for now.