We thought we were doing better...they even unhooked him from the EEG. Literally, 5 minutes after the EEG was unhooked, Jacob started seizing again. He probably had close to 10 seizures within 1,5 hours. Jacob is now hooked up to the EEG again...waiting for more seizures.
At the same time, the pH probe study is going. Jacob was very upset when they put the tube down into the esophagus, but is now tolerating it pretty well. It will last thru the morning.
Tomorrow Jacob might have a big day. The IV line in his neck is no good any longer, and they're not sure they can find another line easily. If we can get on the surgery schedule, they will insert the medical port tomorrow. I'll keep you posted. The thing I found out today is that we always have to go into the hospital/doctor when Jacob has a fever due to possible infection of the port.
Not sure when we'll get home now with the seizure set back this afternoon and possibly surgery tomorrow. The doctor told me we have to take one day at a time.
Sarah has been doing so well with this whole prolonged hospitalization, but I can see that it's starting to get to her. She was very upset last night, and was screaming that it was all Jacob's fault, and that she was not going to come and visit him anymore. Today, she had a play date after school, so that was good distraction for her! She is such a good girl, just a bit too much going on right now...
Keep your fingers crossed for Jacob's surgery and him tolerating the anaesthesia tomorrow.