Today, Breanna saw the ENT. He inserted a camera through her nose to check things out and look for any physical problems that could be causing her breathing difficulties. He found that she has a little bit of a “floppy voice box” which means she has some extra tissue that may need to be removed. He wants to do a bronchoscopy (inserting a camera through her nose under anesthesia to see more of the airway) and a sleep endoscopy (using a camera inside the airway to watch things while she sleeps) and will possibly clip the excess tissue on the voice box if it looks to be what is causing the problem all of that will be done with an overnight stay at the hospital, hopefully in the next couple of weeks.
He also gave us results of a sleep study that Breanna did with an overnight hospital stay a couple of weeks ago. There were a very concerning number of breathing “events” during the sleep study. When I asked what that means, the he told me it meant she stopped or paused in her breathing. So, with the oxygen out of her nose, she was averaging more than 60 times an hour, more than once a minute that she stopped breathing. Even more disturbing is that even with the oxygen in place she averaged 40 times an hour that she stopped breathing.
So tonight, right after I laid down to go to sleep, I heard Breanna coughing and kind of sputtering which she does from time to time. I rushed to her room and tried to help her as she continued coughing and sputtering. She is now sleeping peacefully but I’m up sitting in her room listening to her breathe, hearing the same sounds that she was making when the pediatrician had us call 911, feeling helpless, and really hoping that we can find some answers soon.