I wish I was home with my family watching a movie or decorating for Christmas, I have a huge head ache and I need a drink. Jordan had 2 more seizures today. The first one was pretty bad and lasted about 2 minutes, although possible longer there is still some debate on that. The second one was 30 seconds and we were already at the hospital when it happened.
It was decided that because of what happened yesterday and today she would be admitted into the PICU. Jeff is with her now. She has not had a seizure since 6:10 PM and we are hoping it stays that way. We have no idea why all of a sudden she is having them again. It could be something is wrong with her; it could also be that she has built immunity to one of her seizure medications. When I talked with her doctor this morning he said that the Clonazepam is not really a good long term medication for seizures and he was thinking of weaning her from it, the questions was going to be if we needed to adjust her other medication or add something else. Well it looks like we will either be upping her Keppra or adding something else.
Right now she is sleeping and very confused. She is not talking at all and almost reminds me of when she first started coming out of the coma. Part of that might be the Valium they gave her; she gets very agitated and upset on it, part of it might be her waking up from her seizure. We have no idea how long her postictal state is because she has never really had seizures other than the first one.
So it looks like she has a seizure disorder, which we don’t know what it is. We are going to have to learn how to deal with it and to teach the boys what to look for. It will be learning experience for all of us and something we will tackle together.
Thank you for all the love and support you have given us. We know she is in good hands at Baystate and we are hoping this is not a huge step backwards.
Loves, Hugs, God Bless and Good Night!