August 30, 2005
August 30, 2005 | Updates
Today was pretty good. Not as good as yesterday, but OK. Samuel slept really, really good last night. He slept for about 6 hours straight, woke up around 3 am and was back asleep by 5 and slept until 7:30. Doesn’t sound that much better than some other nights, but they didn’t have to give him near as much medication to keep him to sleep all those hours.He woke up in an OK mood. I gave him a bath and brushed his teeth and rubbed his arms and legs and hands. Then I put the braces on his feet and we went for a walk. It was only about 9:30 am and he wasn’t in all that great of a mood to begin with. But he really got mad when we went outside and it was a bit cool and the wind was blowing. So we headed right back in.
Around 10:30 am, we went down for a hearing test. They tested his ear drums to make sure they are working right and they are. Then will probably test whether the sound is making it to his brain stem when they do the G-tube surgery because he has to be sedated for both of those. Tomorrow, he has an eye test.
Then he had a nice nap from about 1 pm until 4:30 pm. During the nap, one of his physical therapists came and took the cast off his left arm, made a splint for it and casted his right arm. When the other physical therapist came to get him up for therapy, he was NOT happy. He had about 45 minutes of therapy all the while expressing his great disapproval! When that was over, we headed back to his room.
I’m not sure, but I think he is really mad about that cast on his right arm. He keeps moving his arm around and looking at it as it passes his head and getting really upset. I think he wants that right hand back by his face and just can’t get it there. Even tonight as he fell asleep it upset him. He was nearly asleep and he suddenly just started screaming because I’d put a pillow near his head so he couldn’t get that casted arm clear up to his ear. (It just didn’t look comfy.) As soon as he started screaming, I moved the pillow, rolled him on his other side so the offending arm was stuck under him and he fell right to sleep within about 2 minutes. It’s going to be a LONG week or so until that cast comes off!
They also pulled his NJ tube back a bit so it is no longer in his intestine but is now in his stomach. They have kept the same drip feeds all day and he has had no problems with them or his meds going directly into his stomach. That’s good.
They reduced his traxene today and increased his baclefin pump. They just want to get him as awake as possible without increasing his posturing.
So that’s about it and I’m tired! Hopefully tomorrow he’ll forget about that cast on his arm and have a nice day. But probably not. He is, afterall, 2 years old!
Love,
Teresa, Tom, Samuel & Boys
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