Tuesday, January 26, 2010

Jack "The Trooper"

Wow, what a trip! We are finally back from Duke. We went up on Wednesday night and Jack was admitted on Thursday. I say he's a trooper because how many 6-year olds do you know would sit in a bed for 5 days with wires attached to their head and not complain very much?

First the medical stuff:

According to the doctors, they received excellent data from the EEG monitoring. They felt "pretty certain" that all seizures were coming from the left side of the brain which is what we are wanting. The room was equipped with audio and video so they could monitor Jack during his seizures. And boy, did he have a lot! He had all types of seizures while we were there, even a few rare ones that we had not seen very often. And, he was never taken off any of his meds the whole time.

It was wonderful having family nearby since we weren't in Charlotte. Jake and Nat were kind enough to put up with me and it was invaluable having Kris there when the doctors explained what was going on. He provided the "doctor to non-doctor" translations after they left.

The next step is to verify with as much certainty as possible that the seizures are all left brain originating. We are trying to get all those tests scheduled for Feb. 10th at Duke. They will consist of several different types of MRI's.

To "nutshell it" as Lisa likes to say.... if all seizures are left brain and the left brain controls no right side activity, like motor or vision or speech, then performing a surgery to "disconnect" the left brain would have little or no impact on his functioning and most importantly, would eliminate the seizures.

It's scary, but that's where we are headed. It's a question of quality of life.

Secondly, we have to say that the medical care at Duke was first rate. There were two medical teams that covered Jack. They all actually communicated with each other. They explained what they were seeing and what they needed as far as seizure activity from Jack. They interacted with Jack and answered our questions very well, which we had a lot as you can imagine. The nursing staff was excellent as well with the exception of one night nurse. One nurse got weepy when we were leaving. He leaves these women crying wherever he goes!

Thanks to all of those who provided gifts and treats for Jack to keep him amused and for your emails, Facebook messages and phone calls. Keep it going, there's more to come.

PS. Kris, please return Jack's toy pager. You aren't fooling ANYONE.

Pictures below...

Getting settled in the bed with CAYLIE

Melissa, Jack's former social worker stopped by for a visit

Jack with Jake and Nat

Opening one of his many gifts

Kris and Jack

There's an agonizing story behind this plate of spaghetti.

Jack with the best momma in the world getting some lap time

"The Claw"

CAYLIE's favorite mode of sleeping