Ugh. Here are the photos from today's laryngoscopy.
And here are the photos from her last laryngoscopy on 2/8/10 when they removed the granuloma and her "tonsillectomy"/adenoidectomy was done.
Her surgeon came out of the OR saying things are better than he thought in her airway so he is back to not being sure the surgery is a good idea. We didn't nickname him Dr. Jekyl for no reason. We've been talking about doing a Posterior Cricoid Split for nearly 5 years. He says yes, then no, then yes and so on. Don't get me wrong I'd be happy not to put my daughter through an intense airway surgery the problem is she might need it. What changed in the 2 weeks since our appointment? His mind, basically. It's rather complicated to explain but I'll try.
Here is the situation: Today he saw there is no collapse due to the trach. There is no granuloma (caused by the trach, like the one they removed last year). There is no significant subglottic stenosis (narrowness of the trachea below the vocal cords). Her vocal cords are a little short making her airway small (we've known that). They open but not super well. There is a bump, likely damage from endotracheal intubation at birth and scarring from then too (we knew that). The bump could be reducing mobility of the vocal cords plus the scarring.
Essentially her airway looks pretty good. This explains why she has been capping (covering the trach and breathing through her mouth and nose) for 2 1/2 years. Yes, things improved further in June after we started giving her Prevacid on an empty stomach in May, but really she's been doing well with the cap for a long time. The real problem is that she obstructs when she goes to sleep. Let me say this another way if she was able to do as well asleep as she does when awake we would have lost the trach last year or earlier.
The surgery could improve the situation with her sleeping by creating some space between the vocal cords. His concern is that he might do the surgery and it wouldn't help the OSA and she'd still need the trach. We knew that already. He also is concerned because there are risks: aspiration and decreased voice. We knew that too. He's also saying that the OSA may be in the nasal palate area yet 2 weeks ago he said he finally had to admit he didn't think so.
He said he would be more in favor of the surgery if we'd hit a plateau. I pointed out that in a way I think we have...like 2 years ago. He is encouraged that she is no longer removing her cap. While I agree this is a great change I think it is due to a very minor airway improvement since she'd been able to remain capped all day if her nurse was there to watch her every second. Her sleep issues still seem very much the same. And the photos are the real proof to me that things aren't much different.
He gave us as much time as he could to discuss it since he had a child in the OR waiting for him. And he understands all our points and concerns and "wished he had answers". This would leave us once again at the status of waiting and hoping she outgrows this. But I asked for a sleep study. He agreed to call it in and then said to make an appointment with him afterward. The problem there is that it takes about 3 months to get in to see him. So even if things went well (which they won't) we'd be looking at fall/winter before discussing things again which means no surgery anytime soon. So why do a sleep study when I know she can't sleep with the cap? At this point I think we need a base line to really show whether things are improving or not. And I want the doctors to see it themselves, so they aren't just relying on our reports about her sleep issues.
I respect that he is in a difficult position. That there is a lot at stake. That there are no clear answers. I just wish he didn't keep suggesting surgery as an option just to change his mind.