July 12, 2006

Okay, the latest “official” plan is that Gary will be discharged as an inpatient on July 28th and then will go into Day Program on July 31st for two weeks (there was an opening in the program). We will probably go home the weekend of August 5th just to test out the home situation, assuming we can arrange to have someone go to our home before then in order to be there for the people who are delivering Gary’s equipment (in particular the hospital bed and mattress) so that the equipment can be ready for his arrival (I think the delivery people will set up the bed but am not sure).

Mail call: Thanks to Ferenc Fodor for the Hungarian chocolates. We’re going to open a confectionary soon ;-)

To the events of the day. Gary and I got him transferred out of his bed into his wheelchair and then again from his chair to the exercise mat after we’d gotten into the gym. First up was the tech, first task was his stretching. While that was going on, first his case manager found us and told us about the new plan (which, come to think of it, was the first plan), then the PT found us and told us his wheelchair order had been put in, so he should have that in about a month, depending on how quickly the insurance company gets to it.

Next on the tech’s list of things to do was for Gary to practice going backwards in his wheelchair down a long hallway. I had no idea what the purpose of that was, but realized when he attempted going up a ramp backwards that he was using different muscles than when in forward movement. This, in fact, turned out to be the reason for this exercise, as the PT explained when I later asked her about it – it was another way for him to exercise his back muscles, not only because they are a weak point with him but to try to keep those muscles in balance with the muscles he will normally be using while functioning from a wheelchair (though Gary told me later that except for going up the ramp that way, going backwards had been easy).

When the PT took over, we headed toward the parking ramp for more car transfer practice, using our car. On the way, she mentioned that we should start on the paperwork – obtained from the case manager – for getting handicapped parking stickers. Later, when we got the forms from the case manager, she said that after Gary filled them out, Shepherd would notarize them, and then we would take them to the DMV (oh boy). She claimed that we would get a placard that could be transferred from one car to another, so that no matter what vehicle Gary was in (including that of friends) he could always be in a handicapped parking space, thus giving him greater room for maneuvering his chair.

Back to the car transfers. This time Gary used his long transfer board, and though the transfers still weren’t easy, he was confident that “he can get this.” The PT showed me how she wanted me to place my hands (one above his waist, the other under his butt) until he can do them entirely on his own, but she didn’t have me do it then, “saving” me until he was more proficient at the transfers.

On the way back to the gym, he again tackled that ramp leading to the elevators that previously had given him fits. He was again amazed at how easy it was for him now, saying that it was a matter of strength, technique – and confidence, the last required to get up the momentum needed to tackle the ramp. In the gym we practiced transfers to and from a hospital bed that had just been delivered to the gym for that purpose. The transfers went quite well, and in fact one was fantastic – he got tremendous “butt height” on it (in fact the thought went through my mind that what he’d done was the equivalent of a standing high jump), and the therapist and I looked at each other in surprise, each thinking the other must have supplied a lot of help. But we hadn’t. I concluded that somehow his foot placement, along with the push of his arms, had allowed him to use his legs as pivots extremely effectively, getting him up and over as never before. He said he’d had the same thought and wished he could do that all the time, and that if he could, he could just do a depression lift into an airplane seat and not have to have two people lift him into it.

Hopefully some day soon!

After that session, we returned to his room. I called Joe – he had called when we were on our way to the parking garage but I had had to put him off until after the class. Joe told us that by this Friday, an entire wing of the house was scheduled to be done – both bathrooms finished, all floors put in, completed painting of the family room and master bedroom. This would “officially” leave only having the garage built, but Joe mentioned that this would be the perfect time to have the two other bedrooms painted as well, since everything would be out of those rooms for the laying of the wood floors. Fearing we would be taxing our volunteers beyond the breaking point if they were presented with this new project ;-) we decided it would be best to hire a professional painter to do those rooms. This left one not-so-little problem – what to do with all my stuff that was on the “bookcases” made out of wood planks and cinder blocks located in my “study” (aka “the computer room”; I’m sure Joe had other names for the room, given the state he found it in). We decided the best thing to do was to get rid of the cinder blocks, since neither Gary nor I are going to be able to lug them around (note: anyone who wants free cinder blocks, get them from Joe – otherwise they are going into the dumpster), and replace that shelving with metal shelving. I doubt Joe is going to have time to put all the books, etc., on the shelves before leaving, so I believe the plan is to leave that stuff out in the hall until I can get at it. Maybe that will be an incentive for me to reorganize and throw out some of the things I keep “just in case” (“just in case I again become a fanatical gardener,” for instance). *Maybe* that will be an incentive. Knowing me, however . . .

After that I talked to Gary’s nurse and told her I thought Gary should start doing his own bowel program now, with a nurse in attendance in case he wasn’t successful at it – it seemed odd to me that with something so important he had only been scheduled to try it once a week last week, this week, and next week. She said that she would put a note to that effect in with his orders, and that he would start doing it on Friday – not tomorrow, as that is the day I “get” to have the hands-on experience of doing it on him (I should have been practicing finger pushups all this time). After the nurse left, Gary jokingly said thanks a lot for volunteering him to take on this responsibility. Okay, maybe he was only half-joking.

In the midafternoon came another “group” activity. They started off with volleyball, using a beach ball. The motto was “use what you’ve got,” since one player was a quad but with some limited use of his arms, one guy had some use of his legs but not much of his arms, one woman could stand with aid, Gary and his roommate – “paras” – had the use of only their upper bodies, and so forth. One couldn’t help but cheer them on as they attempted to hit the ball, but it wasn’t exactly a fast-paced game. Before the game started, a Human Resource person came to take pictures of Gary for the news article pitch, and he also took pictures of Gary playing volleyball – he says he’s going to email them to me, so hopefully I’ll have some nice action shots of Gary to put up on the blog ;-)

After volleyball came an educational game. The entire group of people (maybe about fifteen people, as the quads who had been playing cards while the others played volleyball joined in on this activity) was divided into two teams. They picked cards on which were written questions about various topics (“skin care,” “community,” “miscl.”) and answered the questions for points. A lot of the questions were “what if” questions, about what the people would do if faced with various situations out in the community. As time ran out, Gary wanted to know which team had won (has he developed a new competitive streak, or have I missed it all these years?). When he found out his team had lost by 200 points, he said he thought there should be a double or nothing round. The OT said okay, and then gave his team a question. Unfortunately it was on dysreflexia – what steps to take should you experience an instance of it – and most of his team, including him, hadn’t been to that class yet. I had, but Gary said I shouldn’t give hints. He remembered a couple things I’d told him, and some other people remembered a little more, but when his team had answered all they knew, the OT said that wasn’t all and filled in some of the missing things. Only, she didn’t mention everything I had learned in my class, and I couldn’t help it – I burst out with the remaining steps to take. Gary later said he was impressed that I knew the material better than the OT, but I told him that the reason for that was that the condition had scared me so (since it could be life- threatening) that I wanted to make damn sure I knew what to do if it ever happened to him.

After “group” was over, Gary had another session with the exercise rec therapist. This time she had him try out one of the special golf carts. First, he did a depression lift to the seat of the cart – I think that was the highest transfer he’d ever done, but with the help of both the rec therapist and me he did very well. Next, she strapped him to the seat with both a seat belt and a trunk belt – loose enough so he could have movement, of course. She set up something I think might be called a “swing trainer (?)” (basically, a golf ball suspended from a string). She gave him a club, he swivelled the golf cart chair around to where he could hit the ball, and then he practiced some one-armed swings, hanging onto the seat with his other hand so he could lean. “At least I’m hitting the ball,” he said. He did that a while, and then we helped transfer him back down to his wheelchair seat. We were now going in the easier direction – he could use gravity to help him – but I was impressed that he didn’t just plop down onto his chair (which would have been terrible for his flap) but went down in a controlled manner, neither the therapist nor I having to control the rate of his descent. Another sign he is stronger and getting better at his balancing.

The therapist again mentioned that another option, instead of using a special golf cart, was to stay in his own wheelchair and go to the driving range to practice hitting balls. As he wheeled away, I asked him if he thought he might do that when he got home, or if he might use one of those swing trainers (or whatever it was), but he said he didn’t know; he was just doing it here because it was a new toy to play with.

I had to leave for the chiropractor and asked Gary what he was going to do next. He said he was going to stay in the gym and work on some of the weight equipment, because, he said, the volleyball had been useless as exercise. (I think the positive feedback he is getting by seeing the improvements he is making is fueling his motivation to get even stronger.) But when I returned in the evening, he said that exercise session hadn’t gone so well: one piece of equipment that had been recommended to him for strengthening his back was broken, and another one wasn’t set up right (but rather than ask for help, he just decided to do something else – typical! ;-)) What he did instead was tool around the facility, just getting exercise that way. He said one thing he’d done was to go to the same ramp he’d tried to go backwards up this morning. It is a rather steep ramp, and it leads to the stage the winners of the Peachtree Road Race (Wheelchair Division) had mounted in order to get their awards. Gary joshed that he’d thought he’d better practice it in case he had to go onstage next year to receive one of the awards (then noted that if he could win such an award, he would have no problem with the ramp). He said when he’d gotten to the top, he’d gone onstage, not realizing a meeting was taking place there. Someone had recognized him and said, “Hi, Gary.” I asked him if he’d told her he was practicing to receive his award next year, but that hadn’t occurred to him at the time.

In the evening I came laden with containers of Fresh Market mixed berries and Hagen Daz mango ice cream. He wanted both. As I dished them out, his nurse for the night shift came to introduce herself, as the nurses and techs always do. She said she just wanted to tell him who his nurse and his tech were for this evening, but she could see that he had his nurse and his tech right here (meaning me :-)). Gary said, “I sure do.”

We did our usual thing – stretching, wound care, then me climbing in with him for a short time. I told him I wondered if they’d let me participate in Day Program with him as I was doing now with his therapy sessions, or if they would at least let me observe the sessions. He said he didn’t see why not, and I reminded him that they had originally told me that after the first few days I wouldn’t be allowed to be with him during his therapy here, but that they’d never brought it up again – and I certainly hadn’t. He said he supposed whether or not they let family members stay depended on what the family members did – he said he sure wouldn’t want the parents or a spouse of a student being in his classroom when he was teaching – especially if they gave hints. He noted that I did the opposite, and then he mimicked me talking to the therapists and nurses: “Are you sure he doesn’t need more weight on the rickshaw?” “Yes, he can do another hour of therapy without a break.” “I think he should be practicing his bowel program every day now.” And the best one, according to him, was my answering for him the nurse’s question of “Are you in any pain?” by saying, “No, he’s not.” (Hey, he’d always said before that he wasn’t – I saw no reason for him to be in it then! ;-))

After I left his room for the night, I ran into his roommate’s wife in the restroom (she works at her job about half a week, then spends half a week up here). We talked a short time (they found a medication for her husband that is helping ease his pain, but he is sleeping a tremendous amount lately). As I left, I said, “See you tomorrow.” She rolled her eyes and said she had to be here at eight for a wet run (shower). I told her I “got to be here” at eight to do Gary’s bowel program. She said with relief that she’d already done that, and she’d told her husband, “That is the LAST time I am doing THIS!” The two of us started laughing, and then we laughed even more when I told her that when I’d just left Gary a moment ago, I’d said to him, “Just think. Next time I see you, I’ll have my finger up your – ” (You know what I said ;-))

Hey, we have to get our amusement where we find it here.

To finish, some pictures by Janet Rogers. See the blog, http://drpeg2003.blogspot.com/ (scroll down, click for larger pics):


Joe in the process of switching colors in the family room -- Janet Rogers points out you can see the last traces of "Mustard Gas Yellow" around the door facings! (I like how she caught the sculpture of the male and female figures -- that was one of the very first anniversary gifts I gave to Gary.)


The master bathroom, completely tiled, waiting for the plumber to install fixtures tomorrow




Showing off the paint job in the family room.


A shot through the family room into the dining area -- capturing Blackjack!