When I wrote about maintenance (part 1) in last night’s blog, I was mostly referring to our general household. But of course there is another very different level of maintenance going on over in Vernon’s world. Sometimes it feels that is all that is going on…people just moving around him, trying to keep him alive. They are doing a good job of it, but the results are so subtle, it often feels like nothing is happening at all. He’s just…maintaining.He gets fed through a tube because he still can’t swallow correctly/safely. He gets moved from bed to geri-chair because he still can’t sit up safely (without trying to jump ship.) He can tolerate just enough physical therapy to keep his muscles from returning to bone-like tone but not enough to actually move himself around. He gets too active/agitated and then might need to be sedated for his own safety. This doesn’t happen when he has someone there to watch him/keep company. But today, since I was later than usual, doing other maintenance stuff, by the time I got there, he was sound asleep through my entire visit.But the main problems emerging lately have been in his tri-weekly Dialysis sessions. I have received a few calls from the Dialysis center, pleading with me to come sit with him or send someone to sit with him. He is often too active in his chair to safely be dialyzed. Or sometimes he tries to remove the tubes. They aren’t allowed to restrain him for safety, nor is the staff there equipped to handle severely brain-injured patients. Sitting for three hours is very difficult for him, he is uncomfortable, and he can’t always remember why he is stuck in that strange place.I believe that his brain is actually improving, and as his awareness comes, his body reacts, often on its own. It wants to MOVE, to get out of that chair! We’ve seen this before in earlier stages of his recovery, but it is causing problems. If he can’t be dialyzed, he will get sick again…and then we have an even bigger problem.So…here is the conundrum.I have requested a change in time at the Dialysis Center so that I can sit with him three times a week. But though they put us on a waiting list, they say the change is unlikely due to the other patient’s schedules. The 1-4 time he is allotted is difficult for me to get there for. (Justine isn’t allowed into the space and Maki doesn’t get out of school till 3:30 and the center is an hour away from our house.)A friend volunteered to sit with him on Monday and another on Wednesday, but I still don’t have anyone for tomorrow’s session. Our friend Al has committed for a few weeks of Wednesdays, for which I am so thankful.I have also finally started looking into hiring someone to sit with him, which seems the next logical step.If anyone reading this is local and happens to have time on Mondays or Friday afternoons in Costa Mesa, and wants to help out temporarily, please let me know.The time is supposed to be 1-4, but it can often be later. Its a lot to ask, I realize, but I’m feeling desperate enough to ask for help…again.This is the only picture I have for Vernon today. While you were sleeping. Sorry, babe.
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