The Status

>> Sunday, March 20, 2011

We have been in the hospital with Bug for six days. Six long days, almost all of which he has slept through.

He was still acting odd on Monday and I told Glenn he had to go to the ER, that he was in Status again. So we went and he was. Damn it.

They first tried to give him Ativan without an EEG. I said: try again. Get the EEG first. They agreed and that's how we found out he was in Status. Thanks Mom for being so aggressive.

So, they gave him Ativan, and he got sleepy but still was in Status. So another round of Ativan and he was awake and smiling. Still in Status but happier. Queue Depakote in higher dosages and he slept.

I was told it was NOT the Depakote making him sleepy. That it was the seizures. Uh huh. He wasnt this sleepy before we calmed his brain down.

Then they gave him pheno, and then another pheno and he came out of status. But he did not wake up.

And I let them do what they wanted to do until they deviated from the agreed upon plan. Then, we had a talk. The thing is this: with Bug, no one else knows more than I do at this point in time. He has no diagnosis, he has an abnormal EEG and is on some pretty strong meds. But who knows what else may be going on other than seizures? But, they see only the seizures. And I understand that, I live with the T/C's, thanks, I get it. But what they don't know is how happy this child is and if they take that away from us, well, it won't be pretty.

Kris called a few days ago and told me that she received a call asking her to confirm or deny her appointment on Tuesday, with Dr. Filloux. We reasoned that if I called the next morning I might be able to secure an earlier appointment since someone may have canceled that night. Sure enough, I called, and he got an appointment for March 30th. Hoorah! 5 weeks earlier. I am so excited.

Now if he will just wake up.

Mostly, I want him to wake up.


Jennifer March 20, 2011 at 11:54 AM  

My thoughts are with you guys Annette...

Holly Elizabeth March 20, 2011 at 2:37 PM  

Nett, you are right about the Depekote, I know it makes people drowsy. At least, it makes me drowsy. This whole thing just plain sucks for you guys, there's no getting around it - I really hope you can get a real diagnosis for Bug and I wish the doctors and nurses would wise up a bit for you. I am really glad that you are an assertive/aggressive mother and you aren't afraid to take charge with what you know about your little boy. Experience seems to serve better for education than books ever will. It was good to see you and your family Friday night, it was also good to see that Bug was movin' around a bit by the time we (Kris, Jenn & I) left. I am glad to hear that he has woken up for a couple of hours (via Facebook), I hope that's a good sign.



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