by Today was a bit of a rough day.
We had AJs first true ENT appointment to talk about his airway reconstruction and other things. While we were there one of the things they did was a scope. Going down the trach to take a peek things looked good and he tolerated that ok. However he wasn’t a fan of going in via his nose to check out his upper airway. It took a little bit to get him calmed down after.
Unfortunately, it looks as though AJs vocal cords are both paralyzed or otherwise unable to move. It could be a result of scar tissue below them, it could be a result of nerve damage from cardiac surgery, it could be a number of things, but the fact remains that this will add another layer of complexity to his treatment plans and also means that he is not a candidate to try a speaking valve that would allow him to potentially speak with his trach in.
Not the news we were hoping for really. We don’t know what’s next, our ENT here is going to reach out to our ENT out at CHOP, and we will continue working towards what’s next. Odds are that we will travel our to CHOP for a bronch and begin his airway reconstructions in the spring, but it’s possible it will happen sooner than that due to these procedures needing to be done before we are able to do his next heart surgery. Rough roads ahead for sure.
It also solidified that when AJs trach comes out, he has zero way to breathe. In an emergency if he pulls his trach out and can’t get it back in, or if his lung collapses we can’t give him CPR or Oxygen via his mouth, we have to do it all via his stoma (hole in his neck for the trach). Just was a good reminder for us that although he’s been doing well, we absolutely have to watch him as he’s still quite fragile.
After that we took AJ out for his first meal in a restaurant and got lunch at 30hop before returning back to the Drs office for his one year well child appointment and a round of vaccine shots. Poor kid.
We also got an appointment set up for an ultrasound for urology and a referral for the Center for Disabilities and Development to help us keep up on his specific needs for testing and concerns that relate to his Down’s syndrome etc and a few other pieces of homework – scheduling an opthamology appointment and collecting a urine sample at home. Never a dull moment.
We were also reminded that we all need to have flu shots, as does anyone else coming into contact with him. (Friends, family – pllleeeaaasssseee don’t make us beg and remind you, we love visitors, but really need to keep him healthy. We respect that not everyone feels the same way about the flu shot or vaccines, but we still aren’t taking any chances and need your help to do whatever we can to help us protect him — no flu shot and no vaccines will ultimately mean we can’t have you in to visit and we hope you understand!).
Anyway – Now he’s home and napping. He’s in dire need of a bath but I don’t have it in my heart to wake him. He looks so comfy and peaceful and it’s been such a rough day that we may just let him stink it out for another half a day or so…
Prayers please — that we get a clear plan of action from CHOP, that insurance will cover transport while we are outpatient and that his airway reconstruction is something that’s not as crazy complex as it’s sounding like it might be. And that the ultrasound doesn’t flag up another surgery needed for urology. I’d sure like this little guy to get a break. 💔
