Day 10

What started out as a pretty normal day ended not so normal;

Last night was pretty good. Jackson woke only a couple of times, that is until 4am when he decided he wanted to watch Tom & Jerry. He finally fell back asleep and woke again around 7:30. Like I said we started the day pretty normal, we played with cars and tractors, did puzzles, colored and watched Mickey Mouse. It was a nice change from Dora and he seemed to be in a pretty good mood. He even ate a few Cheetos, his favorite! The only problem we noticed was that the bolt seemed to be loose again and looked like it had turned.

The resident Dr came in early afternoon and decided to close off the valve to the ICP monitor because he was doing so well and wasn't draining a whole lot of CSF. The NS came in around 3pm and we went over our concerns and he suggested that we do surgery early next week. We were pretty much expecting that from earlier conversations in the week with other Dr's but since he's the expert at this everyone wanted to wait for him to make a decision.

Jackson has Craniosynostosis, which is basically when the bones in your skull prematurely fuse together and the brain isn't able to grow like is should. Instead the brain has nowhere to grow but in and then the ventricles become small and slit like. When that happens the fluid can build up and cause pressure which is what was causing Jackson to have his "episodes". To fix this they need to do a cranial expansion or remodel his skull. The NS said if we don't do it now we'd be back in another 6-12 months discussing the same thing. Jackson will have to stay for about 3-4 days after the surgery before he is released to go home.

After that our day went back to normal for awhile and we played and took a nap. Daddy went out and bought new Dora and Tom & Jerry videos, thank goodness! When he woke from his nap he was a little more irritable and his pressure was up. After a couple of hours with higher than normal pressure they drained it and he was a little better.

Then when the night nurse came in to do vitals she touched the loose bolt and about sent Jackson through the roof. She then decided that she would wrap it and to make a long story short the bolt came out again but this time so did the catheter. This time the Dr. on the floor called the NS who told her to go ahead and just take it out. They gave him some morphine and have orders for it all night long and his head is wrapped up like a mummy, but he is resting and will be able to move around better without that thing in his head.

I'm going to take advantage of this and get some rest too. We'll pray for a better day tomorrow and pray that the surgery can be scheduled for Mon and of course goes well so that we can all be done with this and go home.