Dear Son was admitted to Big Academic Medical Center yesterday for some EEG testing. For the last few weeks, he had not been sleeping through the night and I was up many times with him, and some nights upwards of fifty times a night. At one point, he was not sleeping more than five to ten minutes at a time. He was also getting quite weak, unable to sit up for only a brief period of time in the morning and then would sleep the rest of the day. I paged the neurologist several times last week and we made several increases to one of the medications and at the end of last week, finally slept through the night and unfortunately, the entire next day. At that point, it was decided that we should bring him in for some EEG testing. He has slept through the night the last three nights and perhaps we have the dosage down now so I am not sure what this test will show. At the very least, we need to have more information. I suspect we will be there for two or three days depending on what the EEG shows.
As you may recall, Dear Son's disabilities were caused by the ARX gene mutation. As a result of this mutation, he has no GABA and he has intractable seizures. He does have a Vagus Nerve Stimulator implanted, which has worked well, but is now on the maximum setting.
As a result of his inability to sleep, I have not slept very much, hence the delay in any postings. In addition, I had to terminate the babysitter last week which only added to the mix. It's always difficult trying to find some good, reliable help for special kids like Dear Son.
Dear Son is in good spirits and is enjoying country music (his favorite) while we are there. The television in our room has not worked since we were admitted and it's been a long night without pc access or television. In my haste, I left most of my reading materials at home.
I will post an update as soon as I have some information although I suspect it won't be until later this week.
Thank you for your concern for Dear Son. Your comments always delight and amaze us.
*Photo is of Dear Son as a little boy, prior to strabismus surgery.
10 comments:
Hoping the EEG yields some useful info and that everyone is sleeping better soon! Keeping you and Dear Son in my thoughts!
Best wishes for a short stay and the welcome sight of your front door, with dear son in tow, very soon!
I hope the EEG results lead you to an answer for the sleeping problem. With all that you do, you need your rest, as does Dear Son.
I'll keep you both in my prayers!
my gos every picture I see is more beautiful. Hoping for resolution, sleep, and good health. (and some TV!) Prayers.
I always worry, Dream Mom, about you and DS when your posts aren't frequent. I hope that we will hear soon that the sleep situation was solved. Until then, you remain close in thought and prayer.
What a beautiful creamy complexion he has. I hope that this hospital stay is not too long and that some nice candystriper will bring you something to read!
get home safe and sound and soon.
I hope you’ll consider writing a Top Ten list for the upcoming carnival. I’d love to include parents’ top ten lists. You can get more information at my blog.
Hi, we're thinking of you guys. I hope DS has a speedy recovery and is home ASAP. (((hugs)))
Praying for you, and for Dear Son.
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