We had some forward movement this week on the journey to decannulation (trach removal).
When Evie first got her trach at 5 weeks, everyone thought we would try to open her nose again and then remove the trach sometime after her first birthday. Of course, Evie always has other plans and she promptly grew extensive scar tissue in her trachea, completely blocking it off. Our ENT informed us that fixing that would be no easy task and he would refer us to Cincinnati Children’s Hospital which is the top facility for airway reconstruction, but she was still too small. We decided to move forward with the referral process, though, so we could at least start building a relationship with the hospital and surgical team. Last week, they let me know they had sent off that paperwork and I could go ahead and call to get the process started. Our ENT’s nurse let us know that we would be seen by the Dr. Cotton. I know most of you won’t know that name, but I’ve seen it tossed around enough in the trach world to know that he is the top doctor in airway reconstruction. He is the go-to guy for the entire world. It was a big ‘woah’ moment to realize that our ENT thinks Evie needs that level of expertise and it was an even bigger ‘woah’ when Ty pointed out to me how big of a deal it was that Dr. Cotton accepted the referral. I mean…woah. I’m incredibly grateful that Evie will be seen by the best in the world, but it’s scary that everyone agrees that she needs to be seen by the best in the world. I’d much prefer to have problems that Dr. Joe Schmoe down the street can fix up.
The nurse practitioner assigned to Evie called on Friday to go over medical history (that was a looong phone call and I still feel like we didn’t go over most of her stuff) and I figured they probably schedule 6-8 months out like most of the specialists we’ve dealt with. You can imagine my shock when she explained that she would be presenting Evie’s case to the team this coming Wednesday and then we’d have our first appointment within the next 2-3 months!
I am so not emotionally ready for this.
There’s this part of me that is comfortable where we’re at. It’s hard. Really hard. But it’s familiar and the thought of surgery and recovery and weeks away from home and even the possibility of losing her is just a little much right now. This is absolutely the best path for her. Being trach free will open up her world in a lot of ways, but as her mom, it’s always hard to prepare for surgery. I’d gladly have her trached the rest of her life if it means I get to keep her, but fear has to be put on the back burner to give her a chance at more.
And to be clear, we have NO idea what will happen at this appointment in regards to the big surgery. They’ll do lots of scoping and testing to see what the situation is, but not all of the testing will be able to be completed since they need to put a scope through the nasal passages to watch how her swallow works and her nose is completely blocked off. They’ll decide on Wednesday what they want to do in regards to that. After taking a look at everything after testing, there are probably three options: 1) She looks great, let’s do the surgery sooner rather than later, 2) She looks great, let’s just wait and give her time to grow more or 3) Evie throws a curve ball and we discover new problems that have to be dealt with first. Obviously I’m hoping for 1 or 2, but I won’t be surprised by 3. It is Evie after all. Girl doesn’t like to play by the rules.
Hopefully I’ll hear on Wednesday or Friday what the plan is and then we’ll wait for insurance to pre-authorize the visit. There’s no big rush, since I don’t want to travel until we’re out of RSV season anyway. Please just be praying for the doctors as they review her case.