still having tracheomalacia "problems" at 23 months old
my son is 23 months old, dx tracheomalacia at 2 months old by ENT also severe innominate artery compression of trachea dx at 4 months old upon ct scan of chest. recently had to change peds dt two er visits with last in may requiring hospitalization for 24 hours. ped kept dxing with asthma, bronchitis, and severe uri but would not prescribe antibiotics. being a nurse, i knew for a fact my child did not have asthma. switched peds got sent to ped. pulmonologist said def. did not have asthma referred to ped. cardiologist ekg and echo were clear did sleep study on july 16 waiting on results til aug 15th. ent said had enlarged adnoids and reddened voicebox but had so much drainage from severe uri couldnt tell what was for sure causing it. my son is still having loud breathing, snoring at times when sleeping, and now will pull his legs up to his chest at times when sleeping. i check his o2 sat and it will be 99% but still feel something still is going on. what should be my next step if the sleep study comes back normal? should i take him back to the ENT and let him put him under again to do bronchoscope? i am EXHAUSTED and of course my son won't do the same thing in the office that he does at home so i can show doc. what happens if he doesn't "outgrow" his tracheomalacia?
Large vessel, in this instance the innominate artery, compression of a major bronchus is well recognized as a cause of symptoms that mimic asthma. This compression, of a non-rigid trachea, due to malacia, would be especially troublesome. Since you did not mention surgery, we conclude that this anomaly has been treated conservatively.
It seems strange that it would take a month to get the sleep study report; that is most unusual. However the most important thing is that you have the pulmonologist review the results of the study: first to determine that it was a satisfactory valid study; and secondly to provide an independent interpretation of the results. Following the preceding suggestion would be extremely important should the study results be said to not confirm the diagnosis of obstructive sleep apnea.
It is not clear what would be gained by performing another bronchoscopy but you should ask the opinion of the ENT about the cause of what you describe as severe upper respiratory infections (URIs) and might it be the enlarged adenoids. Finally you should ask the ENT if the reddened voice box is most likely due to the excessive postnasal drip or could it be due to gastroesophageal reflux disease (GERD).
The odds are very high that your son will outgrow his tracheomalacia, but it may take a while; try to be patient. Should he not, surgical stenting might be a consideration.
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