We got some great news from the bronch yesterday. There is absolutely no malacia, no granulation tissue, and she is not collapsing at the stoma. Hooray! The doc said her airway looks beautiful, aside from some swelling, which she still thinks is what is causing the squeak. I asked her if there is anything else we can be doing to reduce the swelling and she said no, we just need to wait and see.
I have a few ideas though. We have been capping her at night instead of using the cool humidified mist she used to use. She has been doing very well with the cap at night. Now that we know she can be capped at night, I think we will go back to using the cool mist to to see if that helps with the swelling. I also wonder if she is refluxing and the Zantac has stopped working. I am going to email Dr. P with this idea and ask if there is some other med that we can use, just in case this is the problem. I also wonder if capping her all day is possibly contributing to the swelling and irritation, since she is having to breathe in and out around the trach tube, so we are going to try using the PMV during the day to allow her to at least be able to inhale through her trach. Once again, we know she can tolerate the cap, so going back to the PMV will not be a step backwards. I may be grasping at straws here, but I'll do whatever it takes to help Rissa move on past this stage in her life.
Dr. P said she is still hopeful that Marissa will decannulate by the end of the Summer. The catch is that it will probably be done in Denver. She wants to give Rissa plenty of time to get the swelling down and her last day here is August 13. She starts in Denver on September 1, so we will most likely be admitted to TCH and decan up there. I really don't care. We'll go to Abu Dhabi if it means she gets that tube out of her neck!
So now we play the waiting game. I've been playing for the last 3 1/2 years and I have found I am not very good at it. Oh well, I'll just keep playing, I guess.