Wow, alot has happened since Tuesday! I've been with Harley at the hospital, unable to update. So here goes!
First off, we moved her over to Phoenix Children's Hospital from St. Joe's on Friday. Let's just say we felt like they'd done all that they could (or all that they WOULD, I should say) do, so we figured it wouldn't hurt to get a second opinion. So far so good! They don't cater to the parents as much, (no more private rooms with our own bathroom, there's 2 patients to a room now with 1 pull out bed/ chair per patient and 1 bathroom, but ONLY patients can use it: the parent's bathroom is down the hall. Oh, and no more free family meals anymore, either...) but it doesn't matter as long as Harley's getting the care she needs.
Wednesday night her body temp actually got pretty low, SCARY low. We bundled her up with warm blankets and put a hat on her head. She looked like a little snow baby! Her temp finally went back up to a more comfortable level around 3am. Since then her temp has still been running low, but it's for the most part stable. The doctors think it's due to her brain loss. Sometimes when an infant (or anyone) has brain loss their brain can no longer regulate the body's temperature, causing fevers for no reason and also causing the body's temperature to drop for no reason.
She also went 15 hours without peeing on Tuesday; they had to put a cathedar in. After that she peed fine. The doctor said it's common for kids with any sort of mitochondrial disorder to have problems peeing or going poop because the muscles become weak, and you use your muscles to pee and poop. Today at 8am they took the cathedar out finally and she's peeing great! She's actually peeing more OUT than she's getting IN which is wonderful since she's still bloated!
They also re-started her feeds last night! They started them at 15 ml/hr and raised them 5 ml/hr (about half an ounce) every 6 hours. She's now up to 30 ml/hr! Yay Harley! She's doing great on them, too! They're proportionately lowering her IV fluids she's getting, too.
Overall, Harley honestly seems less yellow (Cameron, his mom and I ALL agreed, it's not just a figment of our imaginations anymore!), about the same bloating-wise (her belly went down then bloated back up after they re-started her feeds) and a little more tired, but when she's awake she's still alert!
Oh, and her carbon dioxide levels in her blood were apparently a little high, but not alarming. We're going to have a care meeting sometime this week, probably Wednesday or so, with all the doctors to kind of make a plan of what we'll do for Harley. Hope all goes well! I'll update as things happen. = )