Wednesday, November 4, 2009


Jacob is back in the PICU tonight. No IV medication is biting so far on the seizures. They are continuing in full force. Over night, Jacob had 15 seizures (and additional seizure activity) in his sleep. He hasn't gotten many breaks today, but when he does, he is smiling! Apart from that, he's mainly sleeping and fun place to be for Jacob or us. You simply suffer through each seizure with him. We can notice that touch is helping him as well as talking and singing to him. It is as if he hears us even when he's seizing.
Neither Joakim or I like the attending neurologist. We saw her one time about 2,5 years ago, and never went back to her despite her being in Broomfield. She is simply not aggressive enough. It was like she didn't want to do whatever it takes to stop the seizures. Very frustrating!!! Jacob's neurologist is very involved, so she got us to the PICU, so we can start Jacob on Versed drip. We don't know if it will work, but we're definitely bringing forward the big guns now.
So far all tests are negative, so we don't know what type of virus he has. The only thing we know is that it's a nasty one. There is also a big question what to do with Jacob's seizure medication long-term, since he simply can't be on Versed drip long-term (can only be given in the PICU).
No talk about the CT scan yet, since Jacob is not close to being stabilized. It's hard to say what all this seizing will do to his brain long-term. There are many hours at night to worry about it...Also, no talk about going home.
New day tomorrow, hoping for a little bit of a better day.
Good night, Maria.

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