at the hospital doing the VEEG. Here is the story...
When we first got here on Wed. the nurse practitioner told us that from the videos I took at home as well as my descriptions and their knowledge of low tone CP kids, they felt that there was a chance that the retching episodes were actually seizures. If it turned out that they were seizures it would also explain why no meds are helping and they might be better controlled with different seizure meds. I spoke with the doctor later that day and she said that it appeared that he was having seizures, but she did not have much info since we had only been there for a few hours.
Yesterday, I spoke again with the doctor. Bad news. He is definitely having seizure activity, however there is no correlation with the retching episodes. He had a lot (over 40) of electrographic seizures that could not be seen clinically...meaning they can been seen on the EEG, but there are no signs when you look at him that he is having a seizure. They were very short episodes though, most around 5 seconds or less.
The plan was to keep him here for another night just to be sure they were seeing all of his typical behavior and then decide if they were going to do anything to his meds or not. The doctors meet at 11 and then start rounds so we may not know anything for a couple hours yet.
Hopefully we will be discharged sooner than later since I am dreaming of beating the traffic going home. Doesn't look like that is going to happen, it will likely be a long trip home both because of the traffic and because the weather is not all that good today.
On the positive side...we have out own room and it is a decent size. It has a bathroom with a shower. And wireless internet!!!!! Definitely nicer than Children's Memorial in that respect. However, the cafeteria is not as good as CMH by far (which surprises me since I never though theirs was good at all!) and I know where the free coffee is over there. I would do some exploring here, but you can't leave the kids alone in the EMU so if I go anywhere I have to call the nurse to stay with him.
