June 16, 2007

VEEG -- Thursday

Rob and Evan had an NYU Hospital slumber party and when I arrived at the hospital in the morning, Rob had a big smile on his face and told me Evan was being released a day early. Apparently they got around 30 seizures on the Video EEG in two days -- only 17 that we saw -- and they were all coming from the same place. Dr. LaJoie said she didn't think it made any sense to stay longer because all the seizures were so consistent.

So as soon as I arrived at the hospital, we started packing to go back to the Ronald McDonald House of Long Island. When I say packing, this is not an exaggeration. We arrived at the hospital with a suitcase filled mostly with toys and activities. Everything had been spread out, so it took a while to condense it all back into a medium-sized rectangle.

The EEG tech came in and doused Evan's head with acetone to loosen the glue attaching the EEG leads to his scalp and Evan did really well with the whole process. They don't work hard at removing the glue though so Evan was left with a very interesting hairstyle with a lot of crusty glue all over his head.

Before we were released, Dr. LaJoie came back to see us and we got our new medication schedules, lab orders and final words. She asked us if we had any thoughts about doing brain surgery and we asked what they would do if we don't go for surgery. The answer was try different meds (which really haven't shown much success in controlling Evan's seizures). So we asked what sort of time-frame they would recommend for surgery and Dr LaJoie said, "Oh, we're ready when you are. Just give us a little notice when you want to come up." Yowza, that hit like a ton of bricks! So now we have a lot to think about. We still need the MEG scan before we make any moves, so that gives us a little time to sit on all this info.

We left the hospital and made our way back to the Ronald McDonald House. We decided to stay the night and head back home in the morning to make the trip a little easier on all of us.


Mary said...

Ooooo, what a decision to have to make!

They're not recommending the diet at all?

We'll talk in Florida.

Love you!

Mama Lisa said...

They said we could try the diet but it doesn't sound like they expect it to work. We'll probably try a modified Atkins and if there are some positive results we'll step it up to the ketogenic diet. We're going to try the currnet med first though.