by We managed to stay home last weekend!! The past two weekends we ended up inpatient. But we kept ourselves out of trouble this time.
Barely.
Saturday AM we let AJ try one feeding of his new food. That one ~4 ounce feeding turned into a 102.8 temp, puking, pooping, heart rate of 170 (normal is 120), curled up in a ball, sleeping all day, unhappy baby.
This wasn’t our first rodeo though. We got him some extra fluids, watched his diapers and temp, kept in touch with the cardiology team, and managed to pull through the other side at home.
Needless to say, we aren’t going to be trying that food again and will be sticking with an elemental formula.
Today he’s largely back to his happy crazy self, so he got to try out sweet potatoes for the first time. He’s not big into eating and swallowing, but our goal right now is tasting it and not gagging. Swallowing helps, and he’s able, but mostly he pushes it back out of his mouth.
In other news, we are in conversation with CHOP about his airway reconstruction. It’s looking like either December or January that we will have to travel there for an outpatient evaluation one day, with an inpatient triple scope with GI, ENT and Pulmonology the next. That will help us decide what’s next.
We don’t know yet how that transportation will work. We do know that we will likely need to stay at a hotel in walking distance to CHOP as I can’t fathom renting a car and staying away from the hospital when we aren’t home with our own supplies, and the Ronald McDonald house (although nice) has a few too many people and is too long of a hike for my liking with AJ in tow.
This is where I throw out a huge thank you to those of you who have donated recently. Those funds are set aside to help us be able to afford his medical expenses. The 4K bill that we just got from U of I, the 3k ambulance trips from his last surgery out at CHOP, hotel / Ronald McDonald house and meals when we are stuck hundreds of miles from home. It makes a huge difference and we are eternally thankful to everyone who has pitched in. Especially as we look at potentially starting the new year out in PA where our state insurance won’t help pick up any of the tab and we will be starting out on a new deductible and max out of pocket. Eek! God has a plan. I’m sure of it…
Anyway…. things here are trucking along. The current name of the game is to just stay healthy and home while we figure out our next steps!
Thank you, as always for all your love and prayers! We definitely don’t take them for granted!!
