I can’t tell you how excited we are about the new ENT!
Because he listened!
I mean, he really really really listened!
And he was appalled she has been through all she has endured, and understood why she shouldn’t have had to endure any of it.
And and and! Get this!
HE SHOULD HAVE BEEN HER ENT ALL THIS TIME!
He worked at Children’s in OKC as a teaching doctor up until the first of April of last year.
Kyrie was born April 8th.
They called him about her, and he tried to consult but because he wasn’t teaching anymore they wouldn’t let him back even just to help.
And so the guy who did her tongue and then did the tongue lip adhesion, HE HAD NEVER DONE IT BEFORE.
And it has caused some of the problems she now has, which he could see on the scope today.
Which he should have disclosed but didn’t, so they didn’t refer back to this ENT we found today, and probably how all the referring to the wrong doctors got started.
And it has taken us this long to untangle it.
He also thinks some of her swelling is from reflux, and so is starting her on a new medicine to help with that. If that works, it should help her stop silent aspirating on her own secretions, which may be the cause of the random desats we see that don’t present consistently.
She has grown into her epiglottis, so I am glad we didn’t let them shave it!
Her voice box is still floppy and her trachea is still collapsish but he has a plan for that, too.
He also saw some other swelling and some palate repair issues, which he and his office team can help with – without sending her out of state to speciality hospitals!
He did all that scoping without having to sedate or intubate her!
Just right there in the office!
He also got her recent swallow study, and scheduled a new sleep study, and sent her downstairs for another hearing test – which she failed again. So they said she does need hearing aids, but they will check her again in December and then also get her on the waiting list for an ABR (hearing test while she is asleep).
He thinks he can help manage her care and agrees good care should prevent the kind of hospitalizations we have had to have, and that he would do a trach and followup with that if we didn’t want another distraction in the future.
But for now, he thinks what is wrong is the snowball effect of the medical care drama we have endured, and little things gone wrong along the way… but that these are things he can make better, and then she will improve he thinks without more interventions.
Like, as in, he has a specific plan to get her off oxygen and the feeding tube, even, showing me on the video what is going wrong where and what he can do about it.
He has been wondering for the last year and a half where she was and what happened to her, and can’t believe she survived to find him again already.
He was almost as glad to see us as we were to find him!
And nobody forgets those eyes she has!
More later – she is hungry! But it went so well, and there is hope!
HOPE, you guys!