Sorry everyone. I have been very busy with work and just have not had the chance to update. I'm replacing my earlier note from today with the more full update you were all looking for. Hey, it's not easy being the press agent for Jack along with my other duties. :)
Jack's MRI showed that he had the "right" anatomy to attempt a third ventriculostomy so that's what Dr. Sacco did. The procedure went very smoothly apparently. Dr. Sacco came out telling us that he was very happy with how things went and we should be called back soon to see Jack. A short time later the recovery room nurse called into the family waiting room and asked me to come in and set up Jack's Bipap. They were maintaining his airway with a chin thrust, frequently trying to arouse him to breathe, and keeping his oxygen "wide open" and still he was dropping his oxygen levels pretty low. We put the Bipap on his maximum settings and they kept the oxygen wide open but we just couldn't keep his oxygen levels up until after he had a couple of respiratory treatments and some Narcan to counteract the effects of the anesthesia. Slowly but surely his oxygen levels stabilized and they transferred us to a room. He slept all afternoon and woke up just in time for supper. So, of course, he stayed up a good bit of the night. The every 4 hour neurochecks were not all that bad since he was pretty much awake anyway. He did not appear to have much pain after the surgery. Dr. Sacco said that the surgery is not a painful one. But Jack is getting more teeth in so we were giving him Tylenol not really knowing if he was having surgical pain or mouth pain.
Jack's teeth appear to be coming in on top of each other. It looks pretty painful.
Dr. Swift who made rounds on Jack's discharge day told us to expect Jack's soft spots to fill back up and then slowly recede. He said that Jack's head should definitely not continue to grow and we should call if we noticed it getting bigger. He also told us to watch out for increased sleepiness and irritability. It took a few days for Jack's balance to return and he was more irritable than usual. But again, the question was is the balance issue just because he was kept in bed while in the hospital and is the irritability caused by the teeth? Either way, his balance and irritability pretty much sorted itself out by this past Tuesday morning.
Jack is walking all over the place and we are still not used to seeing it. He also seems to be playing with sounds a bit more lately. He seems really happy to be home. I think he enjoys the freedom of walking. He still likes to push his push toys but now he does not depend on them. He smiles such great big smiles while he is walking around. Man, is he ever busy busy busy. Naps are more of a challenge with the recent schedule flip flops and his new found freedom. Also, bedtime has gotten to be pretty late. We are going to have to work on that. Even super babies need their sleep!
One thing we are worried about is Jack's left eye. It almost popped out the night he had the ventriculostomy and again Wednesday night. Our surgeon wants us to send him a profile and head shot so he can kind of evaluate the eye long distance.
I am sure that I left some stuff out and I'll add pictures later.
Thanks again for all the prayers.