Not much to report on Jack. I'm home from NY finally but Lisa says that he's about the same. Still having hallucinations. He's still not experienced any seizures but the hallucinations are puzzling. They are not very severe and he can be easily diverted from them.
Otherwise, he is eating and sleeping well and generally in a good frame of mind.
We were at Duke yesterday for our follow-up visits with the neurosurgeon and neurologist. Jack also had an EEG done.
The neurosurgeon was very impressed with how well Jack is doing physically. Jack walked a few steps for him and he thought he looked real good considering his surgery was just last month.
We discussed the hallucinations with both doctors and neither really knows the cause of them. The neurologist speculated that it could be something similar to "forced normalization" where the brain reacts to the stoppage of seizures by producing a psychosis or vice versa. He also said it could be just the brain re-balancing from all the trauma of the surgery, the different medicines, etc. He was optimistic that it is a temporary thing and that he should continue to improve.
We also discussed the results of the EEG. His right side looks normal, i.e. no seizures. And interestingly, he can still see the seizures firing away on the left but since the disconnections were made, there's no manifestations of them. Pretty amazing.
And of course, the best part of all, still no seizures since June 2nd. So, we will continue on the one medication for now and hope that the hallucinations subside soon.
Well, we got home late last night, around 8:30. I am packing and heading for NY for 10 days on business. We will talk to you all soon.
Jack seems to be improving each day as he didn't appear to have any hallucinations today at all. He actually slept 16 hours last night! He complained of a headache tonight but other than that had a very good day. He even did some walking for Mom this afternoon.
Jack is now on only one medication; an anti-seizure med that he has been taking for many months and tolerates well. All other meds were stopped earlier this week. This is pretty amazing considering he was on as many as 6 or 7 at a time at one point.
We're hopeful that he is on the road to a complete recovery.
While it is wonderful to be home, Jack is still feeling under the weather. The hallucinations have returned and he is fussier than ever. We are hoping that all this is medicine related but we will need to contact the neurologist to see what's going on.
Now that Jack is finally home after being away for over a month, we would like to make
somewhat of an attempt to thank everyone for all they have done for us. While it would be
futile to try to list all the names of everyone, we can at least list all the different and amazing WAYS that people have helped us.
So, thank you to all our family, friends, neighbors, work colleagues and church for the tremendous support.
Here we go:
innumerable cards, toys, books, balloons, silly bands, movies and stuffed animals
two signed letters from famous people: E. Gordan Gee, President of the Ohio State University and Bill Conley, Head football coach at Ohio Dominican University
many, many hospital visits
gift baskets for our trip to Duke Hospital which included snacks, drinks, toys, books, Visa gift cards and a restaurant gift card
donations to paws4people
money for dog food for CAYLIE
babysitting Jack so Lisa and I could go out to eat
staying overnight with Jack so Lisa and I could get a break together
mowing our lawn for us while we were away
cleaning our house for us while we were away
a Sony eReader that allows you to download and store books electronically
A special thanks to all the doctors and nurses at Duke Hospital that took such great care
of Jack while we were there, especially Dr. Gerald Grant.
A VERY special thanks to the nurses and therapists on 4th floor Levine that have always taken such great care of Jack. Many were there when Jack first arrived from PICU back in 2005. Also, thank you to Dr. Colleen Wunderlich and Dr. Maureen Nelson for their superb care, as always, of Jack.