From Charlie’s private Facebook page (yeah, he’s that cool!)
UPDATE APRIL 14:
Sweet baby boy! This little man is a ROCK STAR.
All of Charle’s viral screening came back negative. This puzzled Doctor Doom & Gloom, who was the same one we had Monday, and who gave us the diagnosis of HIE. Little man is now on oral phenobarbital, which I learned how to give him tonight. This will be a once daily dose in the evenings until he outgrows it or the follow up clinic determines he’s no longer at risk for seizures and doesn’t need it anymore. He still hasn’t had a seizure since he was admitted on Saturday.
We’ve been given the green light to do a “care by parent” tomorrow (Friday) night, which is where mum and dad care for baby solo, with nurses popping in every so often to check in if we need help. If we feel comfortable caring for Charlie overnight, we’re going to do a direct to home transfer, with no need for an in-between facility. (This was something Dr. D&G said might be a possibility). That means we could be home with our little bug as soon as Saturday!
Today Charlie had the last of his IVs removed, and all of his meds and supplements stopped. He took to feeding at the breast like a champ, so there are no concerns he is lacking for anything that would require supplementation. According to pre and post weights, he is not taking in *quite* the amount they want him to (but hey, it’s double and triple what he was getting) so they have been giving him just touch more expressed milk from a bottle. It’s hard work getting milk out of a breast, so we’ll keep working on having Charlie not be a lazy feeding bum… because mummy is tired of pumping! His nurse was going to remove his NG tube shortly after I left the hospital tonight. No more tubes for Charlie!!!
Charlie had another MRI scan last night – it was almost identical to his first, so there’s no worsening of injury – which is great news! We likely won’t have more MRIs as he gets older. Dr. D&G did say that given all the viral tests were negative, we’re still looking at hypoxia of some kind, but it’s maybe not as bleak a picture as he’d painted for us on Monday. He says Charles has certainly moved into the moderately affected zone, if not mildly affected… and he’s still puzzled by it all. He keeps saying that only Charlie and time will tell us what he’s capable of, and so far he’s surpassed anything they thought he might. We can’t wait to see what the future has in store for this special guy!