Monday, October 13, 2008

We're back in Cook's....Here are my two updates....

Well, we're back in Cook's. This time in the epilepsy monitoring unit. Thankfully we got medical intervention quick enough that Hannah did not go into respiratory distress so she did not have to be intubated. She's on regular oxygen. Right now they are about to start another dilantin drip. She's resting.

What a night! What a weekend! On Friday Hannah was her happy go lucky self. No illness at all. She had a blast Friday. Friday night out of the blue she has a seizure that lasts over 5 minutes and we end up in ER. I've already whined about that experience so I won't do it again. Saturday she did fine. Nothing out of the ordinary. Sunday she coughed all day but never ran a fever. About 10:30 she had a seizure that lasted 4 1/2 minutes. She came out of it but didn't start breathing again right away. David called 911 and she started breathing. Then she went into the second seizure right after that and it lasted nearly 6 minutes so I gave her diastat and we made a trip to Hillsboro ER in an ambulance. While at the ER Hannah did not seize anymore and all her bloodwork and x-ray's came back alright. They sent us home. We were home 30 minutes when she went into another seizure and it lasted over 6 minutes. We went back to the ER and they started a dilantin drip and sent us to Cook's in an ambulance.

We got to Cook's around 4 a.m. and was in ER until 9:30 a.m. We are in P410 in Epilepsy monitoring unit. Don't have alot of information right now. They are trying to make sure she doesn't have a status. We may get to see the epi that we weren't scheduled to see until April while we are in here. Also, it looks like they are finally going to put her on topomax again.

I'll post again when we have more information. Please pray for Hannah and for David and I. We're so tired. We were up the entire night and didn't get much sleep. Also, pray for the boys. They are both being so brave but I know they are worried. Thanks.


The neuro just came in and we had a long chat. He does not want us back on Topomax. He thinks we need to try other med combinations before we resort to going back on topomax. He's reasoning is that Hannah's biggest problem outside of seizures is development and when we took her off topomax her world opened up. I agree, but a part of me wants to go back to what works no matter the cost. I so wish I could know what Hannah would prefer. (((sigh))) Right now, the plan is to put her on Keppra. I'm very nervous about it because everyone I know that has a kid on it has told me horror stories about it. Saying it made thier kid psychotic, etc. He promised me that if we saw that it was going to affect Hannah that way we'd go off of it and he'd put her back on topomax. He says that he sees more people do well on keppra than don't. Anyway, they're about to hook her up to continual EEg and video EEg. When we get the results form all that we'll make a decision. Please pray we make the right one. I'll update when I can. She's still resting well.

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