Today was the much anticipated follow up appointment with Dr. V from ENT. Based on what he said after the scope last week we weren't really sure what to expect but he started right into discussing our surgical options. He really is an amazing Doctor. He took an extraordinary amount of time explaining and re-explaining the surgeries for us and answering all of our questions.
One of my first questions for him was why he initially wanted to wait another year. His answer surprised me. Basically it was because it would give him a bit more room to work with during the surgery since Caelan would have grown that much more. :) Ok. That makes sense, much better than simple procrastination! I'm also glad I didn't put too much hope into the idea that it was because there was still a chance that Caelan's vocal cords might still come back.
The surgery is called "lateralization of the vocal cords" through a laryngotracheoplasty approach with a rib graft. Yep, we got him to write it down for us! The idea is that he'll pin the last third of Caelan's vocal cords open to allow him to breath on his own. By trying to leave the first two thirds of his vocal cords together he should have some kind of voice and it will help reduce the risk of aspiration. The vocal cords are held apart with the rib graft. I also confirmed that post surgery there should be no need for humidity, c-pap or oxygen.
There are two different ways this surgery can be done. The first is kind of a 'sprint' version. Everything is done, including removal of the trach and suturing up the stoma. Caelan would remain intubated for 7-10 days and be highly sedated to allow the cords to heal. He would be in hospital for about two weeks. Our major concern with this approach is the level of sedation that Caelan would require to keep him comfortable and prevent him from pulling out IV's and the intubation tube. In all likelihood we would be watching our son detox and go through withdrawals again. Never fun.
The other option is a little bit more relaxed, longer, more like a marathon. In this version the tracheostomy would remain after the initial surgery. In addition they would have to add a stent (a tiny tube to hold the vocal cords open and in the new position). The stent isn't required in the first option because the intubation tube serves the same purpose. Six weeks later he would return to hospital and there would be another surgery to remove the stent and the tracheostomy. Our concern with this approach is that Caelan would have to have two surgeries; that's double the risk of infection and all else that can go wrong with going under anaesthesia.
No easy decisions. Fortunately we don't have to make one right now. Dr. V suspects that we're probably looking at about a 6 month wait for booking operating room time. He'd also like to make sure that he scopes again a few weeks before surgery to make sure there are no surprises.
The good news is that it looks like our son will be trach free before the end of the year. I can't begin to describe the high that Damian and I are on today!! We are so excited and dreaming big about vacations to the beach to play in the sand with our three munchkins.