Next steps: opinions
Dr Christina Yang, NYU (pediatric ENT surgeon) – video consult 11/21
Approach
She said she wanted to “see for herself” that E’s tonsils and adenoids are small, that laryngomalacia is gone, and that there’s tongue and epiglottic collapse happening during sleep. She also did not want to rule out that tracheomalacia is present, given the expiration symptoms. She recommended:
Bring E into office for an awake endoscopy AND a pulmonary function test with pulmonologist
Schedule a procedure for them to repeat DISE as well as a bronchoscopy at the same time (propofol – twilight sedation again)
DURING the diagnostic procedure, they’d confirm or deny the presence of tracheomalacia (for medical management) and “fix what they found” in the upper airway – whether that’s supraglottoplasty (any kind of airway reconstruction), epiglottopexy, tongue-base reduction, etc.
My concerns
Putting Elsie through an awake endoscopy after the last one was so traumatic (and nothing was found, when she’s healthy and awake)
Repeating DISE after we already paid for it and put her through it!
Doing a bronchoscopy “just to know” whether there’s also tracheal collapse when Dr Vicencio explained that even if she has some degree of tracheomalacia, we’d just continue to manage it with Atrovent and no surgical interventions
Main concern is that they would decide on and conduct surgery in the same session as diagnosing issues – no time for us to understand what they found, or get on board with their surgical approach, or research whether she/they are the right team for that type of surgery.
Dr Vikash Modi, Weill-Cornell (pediatric ENT surgeon) – in-person visit 12/4
Approach
x
My concerns
x
Dr Eric Gantwerker, Northwell Health (pediatric ENT surgeon) – in-person visit 12/18
Approach
x
My concerns
x