My opinion is 100k is a truck load of money when you have a team of doctors telling you it isnt necessary. But my other opinion is multiple 02 dips to the 70s isnt great. Have you tried anything less drastic like home oxygen? I would want to even ask about cpap before pursuing a surgery OOP your doctors dont think you need.
Opinions on posterior tracheopexy for 2.5yr old?My son, 2.5yr old male, 32lbs has severe tracheobronchomalacia and moderate bronchomalacia and a type 1 laryngeal cleft. The bronchomalacia goes deep into the bronchi. Hes had multiple hospitalizations and 2 PICU stays. Most recent in December. His sleep studies always come back as mildly failed. His baseline o2 overnight is 94 with multiple dips into the 70-80s when healthy. Im in Canada and our doctors feel that surgery is too aggressive since he is generally healthy but struggles with respiratory viruses. They also feel that because the bronchomalacia goes deep into the bronchi it cannot be fixed and therefore correcting the tracheomalacia may not do much and they cant correct the bronchomalacia. Doctors at John Hopkins in Florida feel he is possibly a good candidate for the tracheopexy and would like to see him and run tests however that would be all out of pocket (5-10k$ for tests, 100k$ for surgery). When he is sick, his overnight o2 stays in the 80s. I dont even bring him to the ER anymore because often hes fine otherwise. He may sleep more. When he gets lethargic is when I go in now. Doctors here say he will get stronger as he grows. He sleeps around 15hts per day and does get winded easily. Ive pulled him out of daycare as the risk is just too great to his health. Sorry this is all over the place. Opinions?