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

Wednesday, January 13, 2010

Up and back

We traveled to Duke Hospital in Durham yesterday to meet with Dr. Grant and Dr. Mikati.
We met with Dr. Grant first. He is the neurosurgeon and we REALLY liked him. We did discuss the hemispherectomy but he wants to make absolutely sure that those seizures are all coming from the left side.

The actual procedure involves removing some parts and cutting some others, not removing the whole side as might have been suggested before.

We talked about the test to put the left side asleep and he was definitely hesitant to do that. It has a risk of stroke and would be very traumatic for a 6-year old as he would have to be awake and lie very still. They can get the same info from an MRI.

We discussed the VNS and ketogenic diet again but he felt, although relatively risk free, the chance of reducing or eliminating his seizures would be pretty low. He was personable, interacted with Jack and genuinely listened to our concerns. He and Dr. Mikati are actually in the same office together and work as a team, so they will review Jack's case together as we go forward.

We next saw Dr. Mikati. He is the Director of Pediatric Neurology at Duke. An interesting little man, but obviously very smart. He asked very detailed questions about all the different types of seizures he has, what medicines he has tried, etc. He said we'd start with a 3-7 day EEG monitoring and maybe an MRI later.

We thought it was all going well until Dr. Mikati said... "ok, we'll set a follow-up for April". We said "what?". He said there's a long waiting list for the EEG monitoring. We said we'd really like to push it up if possible so he left the room and came back and few minutes later. Magically, there'd been a cancellation on 01/21.What we think really happened was that he talked to Dr. Grant and decided it was best to move forward more quickly.

So, the plan is to go into Duke on 01/21 for 3-7 days of EEG monitoring. This is where they hook the electrodes up to his head and he has to stay in bed the whole time. It's unpleasant but not uncomfortable. The Child Life people hopefully will keep him entertained and we hope to have CAYLIE in the room with him. The length of time depends on how many and what type of seizures they can collect data on.

According to Dr. Mikati, once they review the EEG, they can reasonably predict a % success rate with the surgery. For example, 70% chance of being seizure free etc. Anything less than 50%, they won't recommend the surgery. It could be anywhere from 50% to 80% depending on the results of the EEG. It is possible that he would not have to take medicine any more. It is also possible that he would still have to take some. It is also possible that the surgery wouldn't work or that seizures could develop on the other side later. We will get more info on the risks if/when it becomes a reality.

Lisa and I feel better about things and are hopeful now that we have a plan. Thanks to all for your thoughts, prayers and concerns.

Saturday, January 9, 2010

Catching up

Finally. Time to breathe. But not much. We head to Duke on Tuesday for two appointments with a neurosurgeon and a neurologist to discuss Jack's situation. Hopefully, the two offices will ACTUALLY communicate and come up with a plan for testing. The situation with the neurosurgeon in Charlotte has gone from the sublime to the ridiculous. He is the one who felt that surgery might be the best option. During our appointment he withheld a final recommendation pending further review of Jack's medical history. His nurse then told us that he was going to present Jack's case to the monthly meeting of neuro-specialists in Charlotte on Dec. 18th. Well, of course, we never heard anything. Finally, we called them and they said that actually our neurologist was supposed to do that. She knows nothing about it. Typical doctor's offices. So, meanwhile nothing gets done and we've got no further recommendation or information from the Charlotte neurosurgeon. He shall remain nameless in this blog. So, we are looking to the two Duke experts for advice. He's supposed to be the best so we may end up with him in the long run anyway. We'll see.

Now on to more fun stuff. We had a wonderful Christmas and New Years. Christmas was at home (always the best place). We spent Christmas afternoon at my brother's along with my parents. For New Year's, we drove to West Virginia to visit Lisa's Aunt Dottie who had her ??th birthday on Dec. 29th. We all know how old she is but aren't allowed to say. She is an amazingly spry ??-year old. Had an interesting experience at the hotel we stayed in regarding Jack and CAYLIE but I think that belongs in our other blog: http://www.jack-paws4people.blogspot.com/. I'll add it soon.
Then we drove on up to Ohio, affectionately known as "the Motherland" in our family. We stayed with Lisa's sister, Jolene and had a great time watching football. Ok, so Lonnie and I had a great time watching football but we did drive over to the Ohio State campus and pick up some OSU stuff for the big game on Friday. Jolene, always colorful, was constantly being reminded by Lonnie and Lisa about little ears so the running joke was that Lisa was going to put her phone number on the school's speedial when Jack started repeating any "interesting" comments when he returned to school. So, we were constantly saying "speedial" to Jolene.

I need to point out that Ohio State won the Rose Bowl big time over a favored Oregon 26-17 and finished the season 11-2 and ranked 5th. I also need to point out to any U. of Cincinnati fans out there who actually is the best team in Ohio now? Same as every other year in history. Ok, enough ranting. Oh, also, we beat Michigan again. Oh and bye-bye Pete. Enjoy the NFL again. Ok, so now I'm REALLY done.

It was VERY cold in Ohio but actually NC is competing very nicely right now. The difference is this won't last long. In Ohio, it will last until March.
Also wishing my brother Mike a speedy recovery from surgery. Get well soon Mike!
Pictures of our trip...

Thursday, January 7, 2010

Life Day

I am sooo behind on blogging and will catch up soon with all the holiday and travel happenings but wanted to recognize that today is what we celebrate as Jack's Life Day. It is the 5th anniversary of Jack's admittance to CMC and represents him being a survivor of Shaken Baby Syndrome.