Gretchen(Celia's mom)
05-27-2002, 11:42 AM
Hi everyone, I have been trying to catch up on posts. I see quite a few kids have/going to be decannulated!!! WOW We just got back from Kansas City. I took Celia there to an Ent for 2nd opinion. Am I glad I did too!!! There were differences that I noticed right away in how he did the flexible scope and he actually told me he saw her voice box and that her airway is collapsing right above them, which is news to us because everytime our old ENT did a flex scope he said that everything looked great and that her spit was just pooling on top of her voice box. So I take that to mean he wasn't looking past the spit. So this new doc has impressed me!! He wants us to go back for a bronch and have her see all the docs she needs and a speech and oral team about her never swallowing. The swallowing thing doesn't look promising but I also came to that conclusion a while back. He said that probably if she wasn't swallowing by now it wouldn't happen expecially with all the therapy we have been doing for 4 years now. He also was very honest with me about how she would probably always have her trach, which I'd already come to that conclusion. We also saw a Gi and he wants to do an endoscope while she is under for the bronch. We will be in Kansas City for a week to get this all done. Not sure yet just when we will do this. This was such a positive experience for us unlike how it was at our old docs!!! These docs were so caring of how Celia was feeling and that is new too. Most of her old docs act like they are zombies and walk into the room do their thing and leave. Â*Just wanted to share our positive experience!!!! Â* Â*Â*I want to also say that I am so glad for all of you who have or soon will be trach free!!! What a blessing!! Â* Â* Â* Â* Â* Â*We have been praying for Sue and also for Brandon&Angel!!!! Â*May God touch them at their time of need !!!!Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Gretchen