July 16, 2006

I spent some time trying to catch up on my sleep this morning. I slept until after eight, worked a little on the blog (yesterday’s events), then went back to bed for another hour before heading over to Shepherd. When I got there, I told Gary I’d been thinking about what the PT had said about running through his routine and seeing if there was anything he thought he needed more work on. I told him there were a couple of things I’d like him to work on, as they were among the hardest on me: getting his legs up on the bed after he’d transferred into it and getting him positioned in the bed. Him getting more flexible and being allowed to bend more will help with the first – his hips and legs just don’t want to bend as they “should,” (like a person with normal flexibility’s would, and he has never had normal flexibility) which makes it so much harder to get their deadweight up on the bed; and since he can’t bend past a certain degree, he can’t reach around his legs while on his side to help me lift them up. I don’t know how much progress we can make on this particular problem, but I want to bring it up to the OT again. About the positioning, I told him it was hard on my back and shoulders to have to grab the top sheet he lies on (which is not tucked in) and pull it toward me in order to get him far enough to my side so that after he rolls I can get the pillows placed properly along his back to keep him up off his flap. He said he and I could work on this problem and he thought he might be able to help a little more on that than he sometimes had been.

Gary’s cousin Jean and her husband Stuart came around noontime, and we soon headed out on our adventure to Mama Fu’s, first taking the “Blue Carpet tunnel” under and up Peachtree street to cut off some uphill travel. Gary noted after the excursion that he could tell his endurance was improving – he’d made it to the restaurant without being tired out by the trip, though we did make a brief rest stop in the Atlanta heat. We spent over an hour eating (well, they did the eating – I’d again forgotten to bring my rice!) and having a really nice chat. One thing you don’t have to worry about those Groteluschens is that they’ll run out of topics of conversation ;-) – which is good, since Gary and I tend to be the quiet type when it comes to conversing. We talked about Gary’s situation, Gary and his cousin exchanged news about various relatives, and so forth. After the meal, I asked Gary how his red curry had been. His restaurant review is that the place is good for a quick Thai meal, but if you really want Thai food there are much better restaurants in Atlanta.

We headed back to Shepherd, Stuart helping Gary up a curb cut that always gives him fits. We had intended to take the tunnel back to Shepherd, but the door to the building containing the elevator that leads to the tunnel was locked. Jean and Stuart checked out the other entrances to the building, but they were all locked too. Stuart offered to walk back to Shepherd, go through the tunnel, come up the elevator, and open the door for us :-) but Gary told him that was all right, we’d just go down Peachtree – it’s not so bad on the stretch we had to cover, being downhill and the sidewalks in decent condition. So we did that, and entered Shepherd through the garden. We pointed out our graffiti sign to Jean and Stuart – maybe I should make a permanent plaque for that sculpture, as the paper sign is gradually deteriorating ;-). As Gary headed up the ramp into Shepherd, Jean asked me if I’d ever tended to try to do too much for Gary, probably asking me that because she’d noted I had let him try to open all the heavy doors on our way to and from the restaurant, had let him huff and puff his way up inclines without giving him any help (though I did help him down that nasty curb cut), and had let him get his own drink at the restaurant’s drink dispenser, only offering to get a lid down for him to cover the drink with because there was no way in hell he could reach it ;-). I told her that the Shepherd people had told me right at the beginning to let him do as much on his own as he could. Gary added that I certainly followed that directive to the letter ;-). I told Jean that the only thing I may provide too much help on is the transfers. I suspect I’ll tend to do that until they clear him on transferring on his own.

Stuart took a digital picture in the garden of Jean, Gary, and me, and said he would email it to me (and send you a picture through the mail, Mom G). I’ll put that up on the blog when I get it (after possibly editing myself out of it ;-)).

After they had to go, I stretched Gary’s legs in the chair, worked on the blog, finally got around to answering a couple emails (sorry about the ones I haven’t responded to yet!). Gary did some balancing exercises and worked on some Topology Proceedings. He was ready for a nap at about four. We’re thinking he might want to make that a regular routine, at least for a while, as taking a nap that early, rather than at about 6pm as he had been, seemed to help regulate his evening ICs. It is, of course, the getting his feet up that helps with the regulating, as it allows the fluid collected in his feet to start to resorb. We’d been putting his feet up in a chair during the afternoon but hadn’t really noticed much benefit from that. Anyway, we’ll see if this was just a coincidence or if the lying down that time in the afternoon really does help.

After he and I got him transferred into bed, I discovered the disadvantage of him dressing up for Jean and Stuart – Dockers. They don’t slip off his legs as easily as those stretchy sleep pants do. Since this was the first time he’d worn them, I thought it best – recalling something we’d been told in one of my classes – to check his skin to see if there was any problem in him wearing the new type of pants. He’d cut the buttons off the back pockets so they wouldn’t press against his skin (which is extra sensitive on account of the SCI), but the back pockets themselves were a new feature. So I got the pants inched off and checked his skin. No problem. I put a pair of sleep pants on him, and then we got him positioned on his side. We tried something new. He pulled and pushed himself over to one side of the bed instead of me pulling him over with the sheet. After he rolled to the side, since he was farther away from me than we’d normally had him, I used three more pillows than usual to prop him up on his side and hip. I’m not sure this new method was easier, as I have to tuck the pillows down under him then pull a sheet over the pillows and then tuck the sheet under the pillows in such a way that they won’t slip, and this way there were more pillows that had to be fussed with (I don’t think I can describe why this method seemed not much easier on my back and shoulder – you’ll just have to trust me ;-)). The good news is that after the flap heals more, we won’t have to be quite this precise about his positioning on his side – he’ll just have to make sure he’s on his side off his sacrum – at least, that is my understanding right now, though we will, of course, check on that before changing anything.

After he was “pillowed,” I covered him, rolled his table around with his water bottle on it, put his call button in reach, turned off his light, and gave him a kiss. “Thank you, Pookie,” he said. I think the extra gentleness in his voice was due to the battle I’d had with the Dockers ;-)

I stayed there a short time, working on the blog, and a resident (doctor, that is) came through the curtain. I played “Keeper of the Gate,” going on alert as the guy moved toward Gary, who appeared asleep. I’m sure the guy would have woken Gary up had I not been there – so he could check off on his report that he’d spoken to the patient, is my guess, whether or not the patient was in the state of consciousness to be spoken to at the moment. But as I was there, instead of waking Gary, the doc told me he was there to see how Gary was doing. Gary’s eyelids briefly fluttered open, and I think he registered the doctor’s presence, but he closed his eyes again without acknowledging the doc’s restatement to him that he was there looking in on him. “He looks exhausted,” the doc said to me. I should have said that was due to being woken up by staff at inopportune moments ;-), but I told him as quietly as I could that Gary always has a little nap in the afternoon, that we’d moved it up in order to see if that helped regulate the ICs, and that he might be a little more tired than usual because we’d gone on an outing. The doc asked if there were any more issues, and I said I didn’t think so. Fortunately the guy didn’t wake up Gary just to make sure .

When I was certain the guy had gone ;-), I left for the hotel. In the evening when I returned, Gary told me that the IC had again been where we wanted it, and then we started on our usual routine, beginning with a transfer into bed. For some reason he slid backward on the wheelchair seat just before he made the transfer, which caused this transfer not to be one I’d want filmed. “Hey, I’m on the bed,” Gary said, meaning that this was the criteria for a successful transfer, even if it hadn’t been one we’d want his therapists to see.

Usually after he is on the bed, I get his legs up as he lays down, but in the position he’d landed, there was no way to get his legs up without him falling backward and hitting his head on the far rail of the bed. So I reclined behind him and helped him ease himself down onto me, so I could prevent him from hitting his head. I then laid him down on the bed and got up to get his legs. This was definitely a new position he was in – I joked that he’d have to sleep in the bed at a forty-five degree angle with his legs hanging out of the bed – but with a little judicious rolling on his part, we finally got him situated. Definitely some refinement of our technique is still needed. ;-)

We then did the stretching, then the wound care, then the repositioning for the night. I climbed in for a hoodle. After a few minutes of drifting, I felt him sort of pawing at my shoulder. This is the kind of thing he does unconsciously when we are in bed and he starts thinking about something (which tended to drive me nuts when I was about to fall asleep!). So I asked him what he was thinking of, and he said of how nice it had been to go out to eat with me, and we should do it when we go home (going out to eat together was something we’d given up when my CFS became so severe, and we’d never resumed the habit – one reason being, I still can’t eat anything out; but it’s been nice here just to sit with him and eat the food I’ve brought (or not) while he has his meal). Him bringing up home reminded me that I’d been wondering about his first days back on the job, whether I should be with him, “in case something happens.” He said he thought he’d be fine once he got in the math dept. building, so there was no need. I said it’ll be odd getting back into some semblance of our usual routines. He said I’d be able to start back with my story writing again, that he was glad I’d been able to continue writing during this time even though writing a blog is so different from the type of writing I’d been doing. He thought I should follow up on others’ suggestions that I try to get the blog published in some form. I wondered how I’d be able to balance trying to work on two very different kinds of writing.

I suppose this is a sign of life moving on, this thinking about the future. I’ve had blinkers on for months now, just getting through day by day. Of course, I can’t think too much about what’s going to be going on a month or so from now – tomorrow’s another full day of therapy!

Latest pics, stealing some captions from Janet Rogers, who took the pictures (those of you getting this by email need to go to the blog at http://drpeg2003.blogspot.com/):

Joe's ingenius solution to the kitchen cabinet problem.



The master bedroom.



Now for three pictures of the master bath. Wow!




As Janet Rogers says, didn't Joe orchestrate a fantastic job! Thanks so much to everyone involved! (I had to laugh when Donna Bennett put in her email that everyone was looking forward to Gary's return, first because they really want him back with them, but secondly so that they can declare the house finished, at least for the time being. She said that the house is really looking good (so we see!) and that "all" that is needed is a little cleaning up, a lot of touch-up where the installers weren't so careful about the paint job done by Joe and the math department volunteers, and the completion of a long list of final touches. I would also like to share a little of what she said about Joe (paraphrasing a bit) – I hope she won't mind. She said that all of them really enjoyed working with Joe and hated to see him leave, that he was easy to work with, always willing to listen to their ideas and discuss what they were doing, and that he’d been full of great ideas – no doubt from his years of experience. She wished she had known some of the things he told them when she was redoing her house over the last two years.)