So we moved to the floor today out of the PICU - Skylar's hardly on any pain medication and seems to be doing well. She's awake and content, not really fussing, and loves the new pink Superwoman balloon Grandma brought :) We decorated her crib since she's alert and just looks around. We just had her first feeding through the new g-tube to test it out... a whopping 10 mL! We'll be testing out the feeds in really small doses for a while and then we'll bump it up to the amount she was on pre-op. Once she's handling that, hopefully we'll be able to go home. It still may be a couple of days, but I'm hopeful that we'll be out by Saturday, possibly sooner. She just closed her eyes for a nap.
I've been really blessed to have been put in contact with a woman whose little boy has SMA type 1 and he is doing really well - she had some great information to pass on to us that will hopefully help Skylar in the long run. Their blog is www.hopeformax.com if you're interested. She was able to share about issues with feeding and typical formula vs. a simple protein mix to save muscle strength in digestion. We're going to meet with a nutritionist here to discuss things further to make sure Skylar gets exactly what she needs. We'll keep you posted. Hope everyone is having a great week so far - thanks for checking in on us!