So after I posted the last message, he slept. He slept from about 3:00, until Steve inadvertently woke him up, around 4:30. After being mad as all get out, he fell back to sleep about a half hour later, and slept until about 8:30. Woke up happy, ran around with the kids, and fell back to sleep by 10:00. Woke up this morning, was happy for about an hour, then got really fussy, lethargic, and threw up.
I called and got the dreaded, "bring him back", and get a CT scan. Yesterday, the CT scan showed that his ventricles were smaller, but not back to pre-blockage size. Today, his ventricles are smaller-back to the right size, but he now has fluid, on the outside of his brain. Apparently his brain is not re-expanding as fast as the fluid is leaving, so it has gone to the outside, between his brain and his skull. They tell me this is common, and to watch him.
We all know this is my favorite thing to do! We have to go back and get another CT, next Thursday. And...if he gets worse, we have to bring him back.
Oh, and they tell me to keep him laying down as much as possible, so the fluid can go to where it needs to. YA RIGHT! I should have asked for a sedative. Although, he runs and runs around and crashes. It's 1:00, and he's asleep again for the 4th time.
It is so frustrating, because he's NOT typical! He's Jack. The fact that NOW he is having symptoms, worries me even more! While I'm glad to be validated, that YES he's not right, I don't like him not being right.
So, once again, keep us in your prayers. Not that I have to ask.... :)
4 comments:
Ugggggg
Well I'm glad you went in, and i'm glad you didn't have to stay.
I think benadryl might be your friend for a few days.
Does he like elmo, tubbies, barney hell anything to keep him on the couch and "lying down"
((HUGS))
oops, sorry, new to this
Sounds like what Sam had after his shunt revision in January 2006. Ended us in the hospital the entire month. They called it a subdural hematoma. I would send a pic if i could. It was this huge bubble on the outside of his head. I thought it was like this huge zit that would eventually pop! LOL Not really but it was huge.
Hope it resolves soon, but they may have to go in and add another drain as they ended up doing for Sam.
Im so sorry Jenny. Even though my kids dont have the difficulties, its always hard to see them sick. I cant even imagine if on top of that I had to worry about such serious issues. I do keep you and Jack and the rest of the gang in our prayers!!
Man that sucks, do you just love when they say things are "normal" sometimes it seems like they don't ever see special needs kiddos up there. Most days when I am up there Caleb is always the exception. Try to do what they say and keep him down--easier said than done. Hopefully everything will start regulating normally--normal for him that is :) Good luck
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