Tuesday, November 15, 2011

Jack and the hospital

For those of you that may not know, Jack is in a highly specialized children's hospital in Virginia.

We have been private about this because it's a hard thing to try to explain to people that Jack's behavior is not always within his control. Actually, much of it is not his fault.

When you talk and interact with him, he seems just so completely normal. Family and close friends, including Eliot and I, have a very hard time figuring out what is misbehavior and impulse control issues related to his traumatic brain injury.

I will admit to being defensive about this at times. Here are the medical facts pertaining to Jack's brain:

He was shaken at about 19 1/2 months, had brain surgery and suffered 4 strokes.

The damage to his brain destroyed almost the entire left half of his brain. He also has damage to the hypothalamus in the right side. This area contributes to our impulse control.

Jack's seizures started a week before his third birthday and escalated until the difficult decision to permanently separated his brain hemispheres was made.

He had his hemispherectomy on June the 2nd at Duke Hospital. A small portion of his right frontal lobe had to be removed to allow for the separation. This area controls executive function, which is crucial for maintaining self control.

Jack spent months trying to recover from surgery, but we have noticed his processing speed is slower, so he gets frustrated easier. School work makes him shut down and get combative with his teachers.

As Eliot has blogged, this past summer was just awful. Bedtime became a huge issue and he hit and scratched us most nights. Fatigue always makes his behavior worse, so as evening came, everything became a battle.

By the end of September when I took him to see our rehab doctor, he was fighting me on most everything and was out of control in her office. Dr. Wunderlich made a referral to the children's hospital in Virginia, where we took him right after Jake's wedding.

I can tell you that it has been heartbreaking for all of us. He desperately wants to come home and we just miss him so. We visit him every two weeks for a weekend. The drive is very long.
It feels rather like prison when we are there. All the units are locked and you can't get out without a key either. Jack is on the acute ward with children with disabilities and other medical issues.

All the kids have an illness or injury with a behavior component. The staff ratio on his unit is two to one. An RN and behavior specialists care for and redirect the kids.

Jack is actually one of the easier patients to deal with, according to the staff. Some of the kids walk around yelling and cussing. One boy talks very little, but thrashes about on his bed yelling strange sounds.

One of the teenage girls with diabetes looks out for Jack and all the other kids. She has issues too of course, but is so very kind and just loves monkey.

It is just a weird place. I can't really describe what it's like. I can tell you that we were shocked at first. Our last visit was much better though. The staff are very good with the kids. We of course hope Jack gets better quickly.

He has received cards from many of our friends and it boosts his spirits. If we know you and you would like his address, please let me know.

I would appreciate your thoughts and prayers for Jack and our family as we go through this very difficult time. He may be there until at least February. We will be with him for all the holidays and continue to visit every other weekend.

The hope is that the hospital staff can teach Jack coping skills and improve his frustration related behavior and impulse control issues. We can hardly wait to have him home. Eliot and I don't like having an empty nest.