Subglottic stenosis Grade IV

Stephanie,
Let me apologize up front, this will be a long message. My daughter, Sara, was born with congenital subglottic stenosis. At that time she had an airway about 2 mm around. Back in October, it was discovered that reflux had left her with a 100% blockage as well. Her doctor did express concern for her safety at that point, being 100% trach dependent. He originally decided to do her surgery ASAP, but later decided since she was stable to try to let her gain weight. She is 18 months old now and only weighs 15 lbs. 12 oz. His ideal weight is 20 lbs. She is a very slow grower, so our surgeon has decided to see how much she can gain by the end of the summer. Regardless of her weight at that time, he plans on doing the surgery, rather than waiting out another respiratory season. Our surgeon is fairly conservative compared to some, but I prefer the conservative approach. Sounds like we are in a similar situation right now. When Sara was first trached, we had discussed going to Dr. Cotton, but we have been lucky enough to find an ENT in Phoenix who has a 100% success rate with the LTP so far. I think it is because he is conservative. Hope this helps a little. I know how scary it is to realize without the trach, no breathing! Good luck.

I forgot to mention that after this discovery, we now take Sara into the office every 2 weeks for trach changes, rather than doing them at home on our own. The reason she was bronched in October had to do with a trach change at home, where she completely closed off and passed out before we could finally get a cut suction catheter in to guide a trach tube over. It was the scariest moment of my life and I had a really hard time agreeing that we could wait a while for surgery. I guess it just goes back to the question of risk vs. benefit when they decide when is the right time. Feel free to email me if you would like to talk. My email is elewis811@aol.com.