August 26, 2005
August 26, 2005 | Updates
I’m posting this update a little earlier than usual because my dad is with Samuel and I have a little free time - nice, huh?! Anyway, today has been a pretty good day. When I got here this morning, Dr. Gooch asked if they could put more botox into Samuel’s back. I asked her if the only side effect could be that he will become immune to the botox and she said yes. So I told them they could go ahead with it because hopefully, this will be the only time in his life that he really needs botox to work.Samuel hadn’t slept very well last night, mostly, I think, because the nurses didn’t do a very good job of scheduling his meds. He took tranxene at 7 pm and clonidine at 8:30 pm and he was asleep by 9 pm. He only slept until about midnight and then again from about 5 am to 7 am. But they never did use his ambien which he can have during the night. And they didn’t give him his clonidine and hour after the tranxene to put him to sleep around 3 am. So I have asked them to help me write up a schedule of what meds they are going to give and when during the night. I have a good idea of what will work to help him sleep, so hopefully, they’ll stick to it and we can get him a good night’s rest.
I feel a ton better about Samuel’s moods and reactions since the Zyprexa is gone. He is much more alert, much more attentive and focusing on things much more today than the last 3 or 4 days. And he is not nearly as upset and “mad”. I also haven’t seen the flushing in his face, and he isn’t absolutely knocked out from 6 am to 2 pm during the day. It’s actually funny that the doctor that discontinued that medication for me wrote in the order that the resident or any other doctor was not allowed to represcribe it. She’s my favorite doctor and you can see why!
They finished up the EEG this afternoon and removed all the sensors from his head. He did have several of his “episodes” during the EEG, so hopefully, they can get enough info to tell me what they are. They also said they will review the entire 21 hours that he had the test and look at all the abnormalities in it to help us find ways to help him.
Then Dr. Gooch came in and put the botox in his back. She also put some in his glutious maximus (scientific term for back side)! They are really hoping to find a way to get him to stop arching his back. They’re afraid he is going to give himself scoliosis. In addition, they raised his dose in his baclefin pump to 45 micrograms per hour during the day and 55 micrograms per hour at night.
They also recasted his left arm today for the last time. They should be able to take it off on Monday and splint it. Then they will start working on his right arm. His left foot also has a brace that we put on it 3 times a day for 2 hours each time. And they may cast his wrists and hands in the future if needed.
Last of all, someone came today to talk to me about the G-tube surgery and the nissen. They aren’t sure still if he will need both surgeries because the doctor is out of town until Monday and hasn’t reviewed the results of Samuel’s test yet. But he will come in on Monday and explain what they want to do and then Samuel is scheduled for the surger on Tuesday.
Today I did get Samuel to sit on my lap in the rocking chair, face me, bend his legs around me and rest his head on my shoulder. He still would try to posture, but he was also a little more relaxed than usual. It was nice and gave him a little bit of a break from being so tense and tight and laying on his back. Hopefully, we will be able to find more and more ways to help him relax.
Keep up your prayers - like I always say. We will probably be headed home within the next 10 days or so. And we’re going to need lots of prayers then as we try to adjust to a whole new life with lots of time needing to be devoted to Samuel.
Thanks everyone for all you’ve done and are doing!
We love you!
Love,
Teresa, Samuel, Tom & the boys
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