Latest with stridor

We had our follow up with ENT this week and unfortunately it wasn't the news we wanted to hear. The Doc heard the stridor and scoped Thomas and he saw the same thing that they saw two weeks ago, some movement, but he had an explanation. Thomas has the muscles to actively close his vocal chords (adduction) which is what you need to speak and make sounds, but he is not able to actively open his chords (abduction), which is what you need to breath. His chords only open about 30% of what they are supposed to. This is concerning because he may not be getting enough air. Multiple times they asked me if he turns blue or gasps or is in pain/distress ever. I feel like I am giving the wrong answer when I say no since everyone is always so surprised by it. I have never seen him turn blue or felt concerned that he wasn't breathing, but now that I have been asked, I think back to every weird noise he makes and when he yawns and wonder if I am missing something. The next step to see how much air he is getting is to do a sleep study. We go spend the night in the hospital and he is hooked up to all the monitors and they record his vitals and activity to make sure everything is normal. They also will check for apnea. The doctor said that if all of that is stable we will just wait and see if he can develop the ability to actively open those chords or if he will need intervention. The intervention may come in the form of a tracheotomy, which is slightly disheartening. I posed this dilemma to the SB young family group that I am in and it seems it is very common and many of them have gone through it, unfortunately all with different outcomes and advice. A few got the trachs and said it helped and was scary, but it is fine now. Some chose to do decompression surgery instead and were very happy with their choice and it solved the issue of the paralyzed vocal chords without a trach. A few mentioned a different doctor at children's who is an airway doc and has helped them with this issue. So, as usual, no clear cut path, but lots of options and wait and see. My concern with wait and see is damaging his vocal chords further and possibly losing function. One family was diagnosed with stridor and told to wait and see if their little one would out grow it, but he never did and they got a second opinion eventually and had surgery, but lost one vocal chord in the process due to damage. At what point do you question doctors and at what point do you trust they know what they are doing? I hate doing unnecessary surgery, but would hate even more losing a function because we were trying to avoid surgery. Also, what surgery do you pick? The more common one that is pretty straight forward but puts a hole in his throat or the more complicated one that wouldn't have outward signs and could still fix the problem? Hopefully the sleep study will have some answers. In the meantime here is a picture of my little trooper in his best known place, the hospital!!