Where have I been? Well, Tuesday I officially moved into the hospital. Charlie was taken out of intensive care and moved into a recovery unit. This means that if I am not with him than he is alone in a room by himself. Also, I am required to do diaper changes, feedings, embilical cord care, oral care, baths, etc. I’m like a brand-new mom, but in a hospital where I keep getting interrupted by docs, techs, therapists, and nurses. I’m figuring out that the resident on staff never does crap for me, but I can sweet talk the right nurse or therapist to do what I want. I am WORKING the system. We still have a bunch of things to work on, but the doctors don’t think he’s critical any more. He looks around, sneezes, yawns, sometimes looks at you, and generally looks like a normal baby but with a few extra tubes. He does not know how to eat, though. An occupational therapist is working with him, but he doesn’t know how to suck from a bottle, and he will not go home if he can’t be fed. If he doesn’t figure it out, there is a surgery that can be done, but they want to give him some time before leaping to surgery as an answer.
Here’s the quick update:
Charlie cannot have thin liquids because his suck coordination isn’t there yet, and he might aspirate
He can only get about 10% of his required nutrition from a bottle, but the therapist is seeing improved coordination. I have to feed him the rest of his meals through a tube in the nose–talk about crappy!
Nuerology has looked at him, and he looks good. They are doing a brain scan to see if there is any seizure activity on the brain. He’s on anti-seizure medicine right now, but if he doesn’t have any signs of it then they will take him off. After that, we’re done with them till he’s out-patient.
Nuerosurgery has not said that they want to do head surgery, and no news is good news.
Nephrology hasn’t talked to us at all, and I still need a consultation with them. Charlie has good "out put" (that’s pee and poop), but he’s on diaretics. They may discuss taking him off and seeing how he does on his own.
I am exausted/hopeful/exasperated/angry/elated sometimes all on the same day. I can’t blog till I get a laptop at the hospital, so that’s a few days off. In the meantime, keep praying for my boy, and I can’t wait till the time when I can catch up with all the wonderful people who’ve been praying for him. His recovery has been amazing, and I am so hopeful about the future.