August 25, 2005
August 25, 2005 | Updates
Today was Tanner’s first day of Junior High. Yeah for him! I hope he had a good day. And I hope he knows how many times I thought of him during the day and wondered how things were going. Hopefully we will be home soon so we can see for ourselves.Samuel fell asleep last night after he was given some tranxene then melatonin. He slept until 6:30 am when they gave him some Zyprexa. I was pretty upset when I got here this morning that they had used the Zyprexa and especially at 6:30 am. I had specifically told them that I didn’t want them to do that again because it caused Samuel to sleep most the day and I don’t want his days and nights mixed up.So Samuel slept until about noon when I finally woke him up. Then I gave him a sponge bath and brushed his teeth and then we tried going for a ride. He was really upset again when he woke up. It’s not an uncomfortable upset. It’s a mad upset. His face flushes and he cries like he’s really, really mad. It’s not like him, and I’m hoping it’s related to the Zyprexa and that it will go away.
I have also noticed that he hasn’t been focusing on much the past few days and he had been having more “seizures” when he first wakes up than later in the day. I am wondering if this is also caused by the Zyprexa. It can cause vision problems, flushing of the face and neck and says it should not be taken by people prone to seizures. I asked the doctors to discontinue it after the dose they gave him this morning and they did. So I am hoping many of these new problems will go away within the next day or two.
At 4 pm, they hooked him up to the EEG machine. It had 22 electrodes that were hooked to his head and chest. They will monitor his brain waves for about 18 hours. I have a schedule where I write down every time he has an “episode”. I also press a button that indicates to the computer that it is happening. I hope they can figure some things out from this test. I know nothing about it, but I certainly see that he has plenty of brain waves. I just don’t know if they’re headed in the right directions.
Tonight he fell asleep by 9 pm with a dose of tranxene at 7 pm and a dose of clonadine at 8:30 pm. He will be able to get melatonin and ambien during the night if he needs it, so hopefully he will sleep. His baclefin pump is still set at 1150 micrograms per 24 hours, but he gets less of a dose during the day and more at night to help him sleep.
The doctors now are mostly concerned with getting his feeding figured out and then finding something to help his back and hips. They are concerned that he is going to cause a curve in his spine from always pulling in the same direction. They don’t know if maybe they can figure out something to ease that or if they can raise the medication in his pump again. We will see. But they are trying to reduce his medications to just the ones that are definitely helping him so that he won’t be so sedated and have so many complications from all of them.
I haven’t seen the sleep apnea except for a few times here and there. I do think it is related to different medications and it will subside as things level out.
Well, that’s all for tonight. I’m pretty tired and ready for a good night’s rest. I sure am glad for everyone who has helped us so much. It’s comforting to know that we’re not alone in all this. Keep the prayers coming. We need them. We might be headed home in the next few weeks. Pray hard that we’ll have the strength to do this and that Samuel will continue to progress and get better.
We love you all!
Love,
The whole Jewkes clan!
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