Dec 14, 2006

Well, we had expected the OT and PT to show up at nine like they did at the summer day program. They were there at 8:15, and I was still in my pajamas, about to bring Gary over his breakfast (because he wasn’t getting out of bed). I wished they had told us they would be there that early so time wasn’t wasted watching Gary eat his breakfast.

After that, he transferred to his chair from the bed (and the therapists noted that when he shops for beds he should get one high enough that in his transfer he clears the brake bar on his wheelchair – the hospital bed was set too low for that, and there was a danger he could land on the brake bar). Then he went into the bathroom to learn to transfer to the commode chair. We had all decided that it would be better for him to have already done his bowel program before they arrived – Gary joked that otherwise the three of us twiddling our thumbs while he was twiddling his finger (sorry, back to bathroom jokes). Gary had read somewhere that that transfer was supposed to be a difficult one, but it didn’t seem to be especially hard, he said. In fact, it was much easier than the transfers he does at home from the shower bench to his wheelchair. This gave the therapists the idea that in getting into and out of the shower, he could transfer first to the commode chair over the toilet seat, and from that to the shower bench, because we are almost positive we can set them up right next to each other. We’ll have to see if he actually does this, but it is an alternative.

It looks like we will have to have an in-floor grab bar installed next to our toilet so he can lean to one side to do the bowel program. He will have to keep his supplies for the program on a rolling cart or maybe on the back of the toilet if he can reach them there (I have a little doubt about that). We will just have to see. I was thinking maybe he could set his transfer board over the sink and put his supplies on that. Another suggestion was to keep them in a bucket on the floor, but I don’t know if he could safely lean over that far.

He is supposed to try doing a bowel program this way over the weekend. If he has any problem, the OT will come back to the apartment on Tuesday and go over it with him again.

Another fact about using the commode chair is that sitting in the cut-out hole puts extra pressure on his bottom, so he’ll need to do weight shifts ever fifteen minutes while on it. And since he sticks a little to it, he is supposed to make sure he carries the family jewels along with him when he hops along the chair to get into the correct position. (Evidently men have “torn” things down there.)

Another thing the therapists suggested is he buy shower shoes or “crocs,” so he can just keep his shoes on in the shower and not bother with having to take shoes off for the shower and then put them back on for his transfers.

Next he did a transfer to his wheelchair, and they set up the commode chair next to the tub bench for him. So he transferred to each of those and ended up in the bathtub (one tip they gave was to leave his feet out of the tub during the transfer – gives a better angle for the transfer).

Gary asked what he should do if he was ever in a place – like the home of a family member – which doesn’t have a handheld shower attachment. They said there are portable ones that one can buy, like moms use for their babies. They also said he should buy a pad for those times he is using a hotel shower bench, as they are not as well-padded as he needs.

They had a couple safety issues they noticed when he was taking his shower. They did not like the fact that he was picking his legs up in order to wash and dry his feet. He had been taught to do it this way when he was last at day program, but at that time they had had a gait belt strapped around his chest to make sure he didn’t slip off the bench (because in order to pick up his feet, he needs to move forward on the bench, grab under his leg, and fall back while picking up his leg; then to wash a foot he crosses it over the opposite knee). He has felt safe enough to do this at home without me there, but they didn’t like this because he has abdominal and leg spasms, which he didn’t have when he was last here. They can be fairly strong and they cause his legs to kick forward (and sometimes his trunk jerks forward too). It is best for stability that his feet stay straight under his knees, not kicked out in front.

So instead of him picking up his legs, they want him to use the grab bar – while hanging onto that he can bend forward and wash his legs and feet with a long shower brush.

Also for safety, they would rather he clean his bottom on the commode chair rather than leaning from side to side on the slippery bench without being tethered to it. So I guess we have been lucky he hasn’t slid off the bench. But I’m guessing he’ll still wash his bottom and his feet as he has been doing, knowing him ;-) I told him he’d better just make sure he never falls off the bench, and he said, “All right.”

Next was dressing in the chair. One thing he learned was that if he leans over the side of his chair and puts a hand over the floor, he can get his hip up much higher than during the other techniques. The therapist also had him incorporate a lot of “depressing into the pants” and leaning side to side and pulling – lots of pulling. I think it’ll just be a matter of him practicing now. There wasn’t really anything else new they could tell him to do. They did say that regular pants tend to fall down in the back for those who spend their days sitting, and that if he went to the website wheelchairjeans.com he could find pants made to order specifically for those who are in wheelchair. For one thing, the backs are elastic, making them a little easier to get on. And they come up higher in the back and lower in the front than regular pants, and are looser in the crotch. For these very reasons, they are not good for men who spend much of their day standing. The pants evidently come in jeans and khaki styles.

As he was dressing, the therapists noted how much more muscle Gary has now. Gary said, yeah, he had muscles he’d never had before in his life. They told him he was buff ;-).

Yesterday while we were gone someone came in and replaced my single bed with a double bed. So now Gary can practice double bed techniques in the apartment. Maybe even try doing his routine in that, though I’m not sure he’ll want to try to get used to the changes while he’s on day program.

So we went into the bedroom for some more practice. The PT had him transfer onto the bed and take his shoes off, while his feet are off the bed – usually he takes them off after he’s gotten his legs onto the bed, so this was different (and more sanitary ;-)). So he leaned way over to the side and down and did this. He wouldn’t be able to do this in his hospital bed – it’s too high. They suggested he could use a grabber to undo his velcro tops and then push the shoes off with it, but I’m sure he will just continue putting his feet on the bed ;-).

Then she had him scoot to the middle of the bed and lay down and practice rolling to each side and sitting up – without grabbing the edge of the bed, as he wanted to do to “cheat.” ;-) Next she had him practice proning himself, and he did it pretty well. Next came a floor-to-bed transfer. This bed is lower than one he’d get for himself, and he did this transfer quite well – I spotted him, but this time I didn’t have to give him any pushes, I’m pretty sure because the bed was lower.

We had forgotten to grease his flap after his shower, and it was at this point I remembered that. So, he lowered his trousers a bit and while on the bed leaned to each side to see if he could cover the area with vaseline. He did quite well, though we all agreed I should be supervising him on this at least for a while to make sure he gets the entire area covered.

The last thing we worked on this morning was car transfers to and from our car. First, she told us no more could I put the transfer board under him – she wanted him to do that himself. So she taught him to do that by putting the board under his leg while he was sitting back in the chair, angling it from the corner of the chair to the corner of the car seat, and then hopping up onto the board before starting to transfer across it. She wanted the wheelchair in a position further back than we were taught, so he did that as well. She said the reason for that is it gives more room ahead of him. I’m not absolutely sure why that is important. It didn’t seem to make much of a difference for the transfer in, but it did for the transfer out, mainly because she wanted him to do that a different way than he was doing. The way he had been doing it up to now was how I suggested he try it after we were having such problems with it when we first came home. She told him she’d never seen any transfer that way before (which is to put both hands in front of him and back out along the board). So, at least I was innovative ;-). He’ll try her way for a while to see if it ends up better for him. His balance is so much better now that techniques that didn’t work for him before may work now.

So, anyway, her way is to transfer by going sideways down the board, not backwards – she said he should be able to get his butt farther along the board before his legs and feet get “hung up,” which has definitely been a problem, his feet getting twisted around each other or stuck in various positions. In her technique, he places the board in a different position than we had it, which should facilitate her method. She also wants him to have both feet out of the car, whereas we had had his feet in because he didn’t like his legs dangling. But she said he could scoot up far enough so that he could get one foot on the footplate and the other on the ground. We tried her method when getting out of the car after day program. Naturally, problems cropped up (they always do when a therapist isn’t around ;-)) – he was scraping his butt along the ridge of the car door frame, plus he hit some little metal dohickey in the door frame with his butt, plus the board seemed to be sitting on top of his brake bar, which didn’t seem too good for the brakes. The transfer wasn’t much better than what we’d come up with ourselves, BUT I realized afterwards that he had forgotten to scoot up far enough to place his feet on the footplate and the ground. So we will try that. In any case, he will discuss it more with the therapists and try it some more, but so far he prefers “our” method.

I then drove Gary to Shepherd, where he was scheduled to meet with his doctor sometime between eleven-thirty and twelve. There were five other patients scheduled for the time between eleven and twelve. The doctor was running about a half hour late. First we were told Gary was second in line, then a little later he got bumped back. So he ate his lunch while sitting in the gym, but then the doctor left for “a brief five minute procedure on someone,” which we had serious doubts would only take five minutes, so we went down to the cafeteria and Gary got some tomato soup served in a hunk of sourdough bread. He brought that back to the gym and ate it, then we sat in the gym some more (I spent the time writing some of this up). A little later, we found Gary had been bumped back again. So Gary went off to the other side of the gym and did his rickshaw exercises. Then, after two and half hours of sitting there waiting for the doctor, Gary’s team nurse (a person who has never impressed me – I’d wished we had the one we had last time) told us she had made a mistake and that the doctor wouldn’t meet with Gary today because he was an “old” (as opposed to “new”) patient. HUH? I was pretty mad about Gary having wasted that time just sitting around. If he hadn’t had another therapy session scheduled, I would have complained that we’d been sitting around waiting AND that his meeting with the doctor was up on the schedule board for everyone to see AND that we had missed a scheduled therapy session on account of the waiting, so why couldn’t we get worked in? But I didn’t want him to miss another therapy session, so I kept my mouth shut. Afterwards Gary sounded like he was sorry he himself hadn’t been more assertive about trying to get in to see the doctor today. The nurse had taken a urine sample earlier, because we wanted to see if there was anything more that could be done about his “leaking problem.” The urine analysis came back positive, so they are sending the sample for further culturing. We should get the result Monday. If they are negative, next week Gary may be scheduled for a urodynamics study, where they investigate what is going on in the bladder.

Anyway, we started the next therapy session. It was with the OT again, and the skill was to try to figure out how to get his own self covered with the sheet and blankets after getting himself proned (and without doing so much wiggling around that he messes up the position of the three pillows that are padding off his legs). Turned out the therapist hadn’t ever dealt with this problem before, so it was basically a brainstorming session. One idea was for him to use safety pins to pin the covers to him like a superman cape, and then after he flops over into the prone position to undo the pins. He tried other things, like trying to pass the covers over the back of his neck by tugging at one end. Or maybe he’ll have to figure out a way to “adapt” a blanket by attaching a short rope to it that he can use to pull it across him. (I had the idea he could sleep in some sort of pup tent made of blanket material that after he got in he could pull the rip cord and the blanket would fall on him – hey, I never said the idea was practical.) Anyway, it’ll be something he’ll just have to play with in the future. When I asked him about it later this evening, he said that if he was alone without help, he might have to resort to sleeping on his sides (and turning so as to not remain on one side too long), a position in which he can fool around with the covers without difficulty. Or, if it is very warm out he could prone without covers.

After this, Gary mentioned that he was thinking of getting a knapsack for the back of his wheelchair instead of using the open bag he got at Shepherd last summer. The knapsack would be able to carry more, and the items in it would be protected from the elements. So the OT got a knapsack and he practiced with it. He didn’t have any real difficulty getting it on and off the back of the chair. The technique is to move a bit forward in his chair, then turn his body sideways in the chair and then get it on (or off) one of the handles on the back of the chair, then turn to the other side to work with the other handle. He did get a little wobbly when working with the backpack after the OT had put books in it, and since I had just before this mentioned that he has trouble sometimes with losing his balance repeatedly when he tries to get his foot of the chair before transferring, and the OT had a suggestion related to his balance issues. She said that although he is good at doing balance exercises and good at activities that don’t require so much of a balance technique, when the two combine he can get wobbly. She suggested that when he finds he is losing his balance a lot in an activity, to first try to get his balance point and then proceed with the activity, rather than just forging ahead with the activity. We’ll get him to a state of zen yet ;-).

So, for instance, with the activity of getting his foot off the footplate, she said he should stop and analyze why it was he was losing his balance so much. She thought it was because he was trying to get his foot off when he was too far forward in the chair. So rather than try to do it when he was at the end of his chair, she suggested he go partway forward and get it off as much as possible, then move to the end of the chair and get it off the rest of the way. And with the backpack wobbles, she had him lean against the back of the wheelchair while working with the backpack rather than trying to do so while sitting in the middle of the chair with his back unsupported.

After this, he was scheduled to do “the nursing game,” but the nurse said he didn’t have to do it because it was the same thing he had done last time he was here. I had wondered how valuable it was going to be, because I figured that would be the case. Anyway, there was another hour now unscheduled – too bad he couldn’t have met with the therapist he’d missed out on earlier.

So, Gary decided to do his stretching and then call it a day. I told him we could practice some of the other stuff, like floor transfers or bump-ups or something, and we laughed and joked that I could always find something for him to do – but he couldn’t be persuaded to be productive ;-) so we went back to the apartment.

Then our evening proceeded much as the previous ones have.

We saw a couple more “old faces” during the day. Gary’s flap doc came by and asked us both how Gary was doing – and said for Gary to take care of his handiwork! We also saw the tech who always seemed to be “fighting” with me over who was going to get to help Gary with something. I saw her at the nursing station and asked her if she wanted to see Gary, because I knew she was someone he wanted to see while he was here. The first thing she says to him is, “I see your wife has been taking good care of you,” and he said, “Yes, she is.” Later, I wondered if she had used those words because she was skeptical I could take as good care of him as she could. Gary laughed and said he didn’t mind having women fight over him – that it didn’t happen often ;-).

All for now.