April 3, 2007

Day 50
Hello, it has been 7 weeks today. There has been great improvement, although Glenn probably doesn't think so. He didn't sleep well last night, because they left the cap on his trache tube. He actually took it off 3 times, but the nurses persevered, and he was still capped when I got there today. They will leave it on again, and the RT told me today that if he continues to do so well, tomorrow they will apply to have the tube removed. The next step will be some sort of scan to watch Glenn try to eat and swallow liquids and food. They do not (nor do I) want anything falling into his lungs. He was really tired and just broke down and had a good old cry tonight. He was falling asleep as we were leaving though, so I hope he will sleep well or at least better tonight. He told me today that everything is hard, even sleeping. That will get better, I know, but he's the one living it, and I can only guess how weary he must really be.
We went for another stroll around the unit today. He relaxes as we walk around, and was actually snoozing for a while. I didn't know then that he hadn't slept very well, so I just enjoyed the relaxed feeling. He said he wanted a drink, which I didn't think he could have, but I made his toothbrush wet and few times, and he swished it around his mouth. It was the best we could do, but it also seemed to do the trick. He is getting really good at using the letter board to convey his messages. The speech path was very impressed with how lucid and clear his sentences are once we figure out what he is actually spelling. We're getting better at that too.
As I edit this, it strikes me again at how fast he has handled the capping. I really thought that it would be a more gradual process. I don't think this was easy on Glenn, but perhaps it's kind of like ripping off a bandaid. I guess the next thing is to see how long it will be before Glenn can actually talk to us. Day by day is how this is going, and I feel like I want Glenn to have a bit of a break, but when he does, I'm anxious that there isn't any progress. Oh dear.
Well, that is about it for today, so 'til next time
Louise