Friday, October 3, 2008

In a Room

We're in a room. P-401. I'm glad PICU is there when you need it, but that's one loud and busy place. Hopefully Hannah can sleep tonight.

I've talked with the Pedi that is going to coordinate her on floor care and he is doing some tests on Hannah's immune system in the morning. He didn't feel like her problem was an immunity problem. He feels like it's an epilepsy problem. Said that her epilepsy could just be changing and getting worse. Not something I wanted to hear.

The neuro came by and he could tell I was upset. We talked some about the situation and I felt some better. He's doing a battery of tests in the morning as well. We will be seeing an epileptologist and the geneticist soon.

Really ones not better than the other. Which do you pick? Immunity disorder or worsening epilepsy? We'll have to take what we get and do what we gotta do. I guess at least we'll know. Maybe.

Hannah's doing better and looks good. She's recovering well. Still hasn't stood on her own yet. We'll try all that tomorrow. Our hope tonight is that she gets a good nights sleep. Her CBK levels are going down so that is a good thing. I talked with the ICU doc last night and he explained to me that status epileptus is traumatic on the body. Hannh's recovered well the last time but each time she has an epidsode her body takes a huge hit. If the status's continue her recovery will start taking longer and longer and even permenant damage can take place. Scary stuff.

Please keep her in your prayers. I'll post an updated picutre.

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