August 17, 2005
August 17, 2005 | Updates
Today was fairly uneventful until about 5 pm and then every doctor and nurse and therapist that had been meaning to come see Samuel during the day showed up at once! So there is a lot to write and I’m afraid I’m going to have to break it into two segments. So read the segment after this one for all the details.Samuel was breathing strangely again when I left last night at about 10 pm. It’s a little unnerving to watch it, but again the nurses didn’t seem too concerned as long as he kept his other stats up. He slept until 2 am again and then didn’t go back to sleep until he got his 8 am meds. I even had them schedule a dose of clonadine and tranzine at 2 am and it apparently didn’t work. So he fell asleep at 8 am and slept until about 11:30 am. After he woke up, I decided not to have them try and put him back to sleep again in hopes that having him up during the day more will help him sleep better at night.
The doctors rounded this morning and told me that they are keeping his level of Baclefin at 1325 for a few days because they are getting a little nervous about raising it. They have only had one other patient at a higher level than he is at and that patient took years to be raised to that level. We feel good about keeping Samuel at this level because we can deal with it each day even though it’s not fun and it can’t go on forever. We feel like we should wait a few days and see how things go.
Samuel’s braces for his legs came 2 days ago and I put one on his bad ankle today for a few hours to give it a good stretch. He didn’t seem to mind it much, so we will probably do that a few times each day.
He is loosing range in his elbows and shoulders, which is really concerning. They are probably going to soft cast one of his arms tomorrow and recast it every day to try and get the range back. Once they do that arm, they will do the other arm and vice versa to try and keep the range in them. He is also loosing some range in his fingers, but there is not too much they can do about that right now.
Tomorrow they will do another test on him to see if he has reflux. They did a test yesterday where they put some metal solution into his stomach to see if he would reflux it into his esophogas and then they x-rayed his stomach & esophogas. They did see some reflux, but not much. This new test will require a tube going down the other side of his nose and into his esophogas to measure the acidity in there which can tell them whether or not he is experiencing reflux. They think he may be because his posturing is so bad and they just want to address that issue at the same time as the G-tube (feeding tube) they want to put in his stomach. If they can address them at the same time, it will be one surgery instead of two.
They also had a sleep apnea doctor come and look at him after I got the doctors to watch him as he falls to sleep. They think that the apnea he is experiencing is caused by some damage to his brain stem. They don’t necessarily want to have him wear a cpap machine because they think it will be too uncomfortable and he will just never sleep. They just want to make sure he isn’t causing any more damage to his brain with the apnea by not getting the right amounts of oxygen and cabon dioxide in his blood. So the “sleep doctor” is going to watch him fall to sleep tonight and then probably will do a sleep monitoring test on him while he sleep tomorrow night. Then we will decide if he just needs oxygen while he sleeps or what.
Just FYI, another thing that could be causing the apnea is some of his meds. And tranzene could be the culprit. Today, we gave him a dose of clonadine at 5 pm and then he went to physical therapy where they gave him a really good work out. On the ride back to his room in his wheelchair, he fell right to sleep. And then after about 15 minutes, I moved him to his bed where he postured for a little while and then went to sleep again. Neither time did I see the apnea - much to the disappointment of the sleep doctor who really doesn’t want to stay here until 8 pm to watch him fall to sleep again. So I think the tranzene may be causing it. Well, I got interrupted in the middle of this post and didn’t get back to it until now – 9 pm. The doctor watched Samuel fall asleep after his bedtime dose of clonadine and tranzine. He did the apnea thing as usual and the doctor is thinking it is probably the tranzine causing it because Samuel was actually waking himself up to breath. We’re going to stop giving that at sleep times and maybe instead try some ambient. Hopefully, that will fix the problem.That’s all for tonight. I guess I’ll see many of you tomorrow night at the benefit dinner. I hope you’ll all be understanding of Tom and I as we are bound to be pretty emotional there. It’s going to be good to see you all and we’re excited. Thanks to my step-mom who is coming to sit with Samuel while we are up there. And thanks to everyone who is so willing to help us. Keep up the faith and prayers for Samuel!
Love,
Teresa & Samuel
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