So Sean had his bronchoscopy this am it showed
aspiration of secretions and acid (from reflux)
swelling where the airway divides into two (bronchialmalacia) caused by AR
swelling of the aerytenoids caused by AR - (the ENT believes this is the cause of his blue spells that the airway collapses at the vocal cords) but as soon as he passes out the vocal cords relax and he is able to breath again.
you can see the acid damage on the airway:(
a narrowing of the airway where his vascular ring was (it was repaired at 6 weeks old he was born with a double aortic arch) this is only significant because he will always sound like he has croup and bark until his airway grows out of the dent (several years from now)
So end result- as of right now no trach as long as AR is controlled soon so that no further swelling or damage to the airway results then he will never need one. He stressed that the AR needs to be controlled soon and that GI needs to find a solution quickly.
Pedi was supposed to consult with GI on Tuesday re: PEG tube/fundo/nuc scan and then call me back or GI call me and I still haven't heard a word
Nutrition increased his calories to 27 cal up from 24 cal but the doc hasn't signed the order yet. DS's intake is down to around 15-20 oz a day on 24 cal down from 24 oz a day on 24 cal since starting the Bethanechol. So the Bethanechol is limiting his intake but it is also stopping the vomiting and the choking. No weight gain in 5 mos:( he has been on 24 cal for 2 mos.
GI said on Monday that he wasn't concerned about the limited intake as long as he isn't loosing weight. Pedi feels that he probably is taking in the same as he always was but before he was taking in 24 but most likely throwing up 9 so his intake really was 15 and that is why he is maintaining. arghhhhh (this is what they said on Monday but haven't heard from them since)