by From a fun Saturday playing at home, to an ER trip and hospital admission on Sunday – this little guy seems to enjoy reminding us how quickly things can change.
Friday we went in to an ENT appointment due to some new noises AJ was making around his trach, we learned he has granulation tissue below his trach and some tracheamalacia (basically his airway constricts a little with each breath). We were advised to be extra cautious and bring AJ in if there were any problems with his breathing and reminded that if his trach comes out or is blocked off, he has no airway from above it through which he can breathe or be easily intubated.
We also got the contact information we need from CHOP to move forward with what’s next for his airway reconstruction. I left a message and am anxiously awaiting what’s next. I have no idea how that transport will work, or the stay. Or… anything. Lots of unknowns left.
Sunday AJ woke up and was working harder to breathe, so up we packed up and loaded into the car to head up. We realized we spend too much time there when I couldn’t figure out who our cardiologist was over the phone because he used his last name.
Anyone with spare prayers – we could definitely use them!
