August 13, 2005
August 13, 2005 | Updates
We’re sure you can all understand how time can get away from you as you sit in a hospital room day after day. I’m not even sure how we missed posting yesterday entirely. It was an OK day as far as days here have gone. We kept Samuel on clonadine nearly every three hours on the dot and that got him to rest for about 90 minutes and then he’d be up for 90 minutes and so on throughout the day. His posturing is much less than before the pump was placed. It’s still not liveable, but it’s much better. His heart rate has been staying at about 170 or below and his respitory rate rarely goes above 40. He is on a dose of 1150 micrograms per 24 hours at this point. And they are apparently leaving him at that dose until Monday to see how he does.We still don’t think that dose will be adequate for him as his left ankle and his right fingers and both elbows are starting to loose range of motion. They are getting very tight and he can’t be stretched unless he is sleeping. So that is not realy workable with the therapy he needs. We’ll have to see what the doctors say on Monday, though.
Two nights ago (the night after we went to the zoo), he didn’t sleep much at all. That’s why we opted to keep him asleep for most of yesterday. Last night, however, he slept very well according to his nurse. He did throw up at about 1 am and then again at about 8 am. It was just stomach acids that he threw up, and we are pretty sure it is the Siminet that is making his stomach upset. We are going to ask his doctors about giving him something to help his stomach with that.
He has been awake since 8 am this morning despite 2 doses of clonadine that we were hoping would give him some rest and some melatonin that he received at noon. His eyes are wide open most of the day today and he is much more awake than we have seen him in about 10 days or so. That’s nice to see, but we wish he would nap so he doesn’t wear himself out.
He received a beautiful blessing from his grandfather on Thursday night and we are feeling very confident that he will continue on this track of slowly getting better. Just a funny note, he has actually gained weight since we got here. He’s not used to eating as consistenly and as much as they are feeding him here. (You know how 2 year olds eat!) So he has gained 4 pounds in the last month. it can’t be bad for him though, since he was a little on the skinny side.
We are just working now on finding the right dose of baclefin in his pump and the right combination of other medications to get his posturing totally under control so he can start some more intense therapy. His heart is still having some issues such as some extreme bradying when he is upset. (That means it will drop from 150 to 40 beats per minute in just a few seconds.) It always picks right back up, though, so they haven’t seemed too concerned. He also did a strange thing on Thursday where he would start to fall asleep and hold his breath. That would wake him up and he would start to breath again. He did that for about 15 minutes and hasn’t done it again. They think it must have been a reaction to the combination of medications he was on at the time. But it was unsettling.
Anyway, that’s all for today. We will for sure post again tomorrow. It’s nice to see him suffering less than before. But he still isn’t anywhere near a point where we would feel comfortable taking him home. Hopefully, that will come sooner than later.
Keep up the prayers! They are helping incredibly! We love you all and thank you for your faith. He is going to be OK, it’s just going to take a long time. Everything happens on God’s timetable whether we like it or not. But we are so very happy with the miracles we’ve received so far and feel as if we are watching the greatest miracle of ever slowly unfold before our eyes. It’s so incredible even though it’s hard.
We love you all!
Tom, Teresa & little baby Samuel