We are settled in to the PICU at UCLA. So far so good. Everyone has been fabulous and fast. His EEG is on and the first little bits of the diet are running into his gut. They will start with a very small amount of ketocal mixed with his Peptamen, and slowly increase to full ketocal. They will check his glucose every 6 hours and increase that if his sugar starts to drop. One new thing we've noticed is that he drops his heartrate with these seizures. Everytime I see a seizure and push the button, his low heartrate monitor goes off. Not scary low, but a big enough drop to make his alarm go off! An interesting new find!
The only problem is the room is tiny with a bed that when I pull it out, is right on top of his bed. No bathroom, and definitely no privacy! I never stayed overnight with him in the PICU in Utah, because it wasn't allowed. But being in a new place, that I don't know, I don't really want to leave him. Especially since my commute can be two hours or more with traffic. At this point I haven't decided what to do yet.
I'll be posting from the iPad so all pictures are iPad camera pics!
6 comments:
This little sweetheart is definitely heaven...praying all goes well
Susie
Glad you guys are settled! Been waiting for an update all day!! :) Praying the docs are able to figure things out!!
Saying prayers for you and your sweet boy. I have not done a great job of keeping up with my blog, let alone some of my favorites, our being one of those. :) So I am sure that you have already mentioned this before but what kind of seizures is Jax having? Or is that the reason for this trip, to find out?
Hi, nice to meet you! Saw that you linked to my Dakin's blog. What a beautiful family you have!! I hope all is going well for Jaxson in the hospital!
If I were you I'd find a camping supply shop and buy a cot. Cots come in very short lengths and you can make it confortable with a cheap "feather top" and blanket, pillow. The cot can be folded up and shoved in the corner or behind the crib. I always do this when my daughter is in hospital. The cot also acts as a great place to sit and stretch when just waiting. As it can fold so easily it's never an issue moving it out of place when the room fills.
Praying for you, Jax, and the doctors :-D
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