by Today Aaron and I left the house after morning meds, managed 3 feeds for AJ, lunch and dinner for us, 2 meds, 2 hours in the car, 1 set of lab draws and 4 different specialist appointments in roughly 9.5 hours.
This little guy was a total trooper. And I hope this gets easier for mom and dad, cause – OOF!
He got his first taste of apples, rolled around in the paper on the beds and napped in between appointments. He only spit up once. He was an absolute rockstar.
And if there was a report card involved from these visits, he would have had straight “A”s today.
Hematology said his lovenox levels are right on par, and we will continue the doses he has and carry on until follow up in 3 months.
Speech says “let him taste food” instead of just yucky formula to see if that goes over better (so far it seems to, but we will see if he feels the same way when it’s mom and dad doing it at home).
Cardiology says that everything looks good and that we should try weaning some of his diuretics, so we have a lower dose on one of those and have one less dose of his sodium chloride. They’re also going to work with speech and dietary on what a better diet for him going forward might be since he’s still so gassy.
Pulmonology was happy with our progress on oxygen weaning thus far and are going to get in touch with ENT. They’ll help answer some questions we had specifically related to his trach and to get a bronch scheduled so we can look at his next steps in airway reconstruction. Somehow we left the hospital without an ENT assigned or ENT follow up, so they’re going to help us suss that out too.
And mom and dad are ready for a nap. 😂
Thank you to everyone for the good thoughts and prayers. They definitely seem to be working, and we appreciate them so much.
Now we’re off to focus on more fun things, like planning for some little guys first birthday… 💕
