First, a thank you to everyone who commented on my last post... I am having a hard time not feeling unbelievably isolated, so it really helps.
Anyway, in today's update on what's becoming World's Most Dismal Blog... Michael went for this sleep study on Wednesday night. I had called ahead and talked to the scheduler for quite some time about whether he would be ok there... and I'd really thought that this would probably be all right. Which goes to show you just how incredibly wrong you can be. First, the rooms were not set up to be comfortable for anyone, much less someone with mobility issues. No comfortable chair. Nothing you could grab onto. A bed with no headboard and a flimsy frame. And, ok, I know that the idea here is that you go and SLEEP, not that you are in a hotel room, but... first you have to hang around for about two hours before you can sleep, and so it's kind of necessary to be at least a little comfortable. Then, after he was all hooked up and went to bed, the technician came in about every ten minutes because he couldn't get the electrodes working properly. This was pretty much like the hospital experience with the beeping monitor... how can you do a sleep study if the subject doesn't actually get to sleep?
By about 1 or so, he was annoyed as hell, and needed the bathroom, so he sat up and called the technician to unhook him... and then I'm not sure what really happened. I suspect that the frame of the flimsy mattress gave way, but I never saw this, so I have no idea. Next thing he knows, he's on the floor... and he can't get up. It's been a long time since it's been easy for him to get up off the floor, but it's always been possible. However, he's been so incredibly weak lately PLUS he has this 30+ pounds of abdominal edema that's making it hard to move PLUS there was nothing stable to balance on... Anyway, he couldn't get up. He asks the tech people to call the paramedics. They are too concerned about their electrodes to do this. They spend half an hour taking things off him, while he sits on his knees before they will call an ambulance. Eventually the ambulance shows up, can't get him up (I suspect that he had no feeling in his legs at all at this point) and take him to the emergency room... back where we were a few days ago. Eventually he phones me... it's now about 4 a.m.... and I come pick him up.
His knees are beyond painful. And he's shaken up to hell. And angry and discouraged. It's hard to blame him.
And I am trying to figure out what I need to do to take care of both of us. I know that things will get better. But it is a little difficult not to get unbelievably discouraged, especially since he is so clearly miserable. I know that I have to try to take care of myself... but how do you do that when the person you love is so unhappy and so uncomfortable?