Friday, May 17, 2013

Update Thursday Night:

Friday, October 5, 2007

Wow. This is not a fun roller coaster. As my wonderful husband said, we are back in ICU. After Eliah's near death experience last night, they did a chest x-ray this morning. And then hooked him up to another EEG. He does this great thing where he goes into a deep sleep, has a seizure and then stops breathing. We have to jump up and stimulate him to breathe again. This has happened about 20-25 times today. They have upped his Phenobarb again. He is taking a huge amount of seizures medications that, again, we are looking for a coma. Nurses are standing by to intubate at a moments notice.

The Neurologist spent about an hour with us today and, as much as I love him, made us feel no better about what's going on. He doesn't know why his seizures keep breaking through. Eliah may be resistant to medications like Kelley is a lot of the time. Anyway, he went over the old CT's with me, as well as the new CT's and the MRI from yesterday. The MRI is so pitiful. There is blood all over the left side of his brain and kind of pooling down at the bottom. Up until this point, the blood was just on the surface of the brain. Now it seems that the blood has entered part of the brain matter (the important stuff). That's the grape sized "something" I was talking about. Except by the time they did the MRI, it was much larger.

The Neurologist said that the darkened area could be a stroke or a blood clot. And it is surrounded by a lot of swelling. A normal brain looks like waves and grooves. The area around the darkened area is all swollen and puffy. This is causing pain and seizures. He told me that if it is a stroke, then the brain around would just liquefy over time, but if it's a blood clot, the swelling may go down and could just be normal tissue again. He is leaning towards blood clot. Me too.

We also met with the Geneticist today. He asked a million questions and listened to my crazy theories. He admitted that he does not know much about Glycoprotein disorders, but he would be happy to test. We will probably start testing on Monday for chromosomal problems, metabolic disorders and Jaeken syndrome (my theory). We should know some answers on Friday. He took me seriously and is interested in learning more about Jaeken syndrome. He wants me to email him with the links to articles citing their connection to Eliah's symptoms. Luckily, I have them all bookmarked, and memorized.

We have no idea when we will get out of the hospital. Eliah's seizures have to stop first. The next step is feeding him. He has not eaten since yesterday. And he fasted most of yesterday for his MRI. I don't think he has even eaten 24oz in the last 60 hours.

After that, it's healing from surgery, trying to wean off meds and trying to get a little normalcy before we can think about heading home. And as much as I feel bad for Natalie, she has been having a great time with Kelley's parents. They have been kind enough to take care of her, bring her to the hospital to visit, and deliver meals to the hospital. We could not be able to do any of this without them.

Well, I think that's all I know for now. As you know, I will try to update as things happen. Please keep praying for my boy!

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