Evie will be having her jaw distraction surgery this coming Monday.
Just a review: Evie’s jaw is too small which doesn’t leave enough room for her tongue. Her tongue then falls back into her airway making breathing and eating difficult (obviously with Evie this is only one small part of her airway and feeding issues). The basic process of a jaw or mandibular distraction is to cut the jaw on each side, insert pins, then turn screws to slowly separate the front of the jaw from the back and allow new bone to fill in the gap. The pins are then left in for 6-8 weeks as the new bone hardens and then the pins are removed.
You can see in this picture how far back Evie’s jaw really sits. Most people have a 2mm overbite and Evie’s is 10 mm.
Here’s a more detailed description of the process (you can click through the little slideshows): Mandibular Distraction
There was mention that they would do internal distractors, so there will be less scarring, but we’ll just see what happens.
I’m not going to lie.
This surgery freaks me the hell out.
Every surgery makes us nervous because of anesthesia risk, but this one has the added heebie jeebie factor. The thought of them slicing her jaw just makes my stomach do flip flops. I don’t want her to go through this one. At all. And even though, we know it’s absolutely necessary, it doesn’t feel absolutely necessary. They’re doing everything possible to make sure the rest of her airway is in great shape to give them the best chance of success with the tracheal reconstruction. We know that, but it doesn’t really make it any easier. There will always be this part of us that thinks, “Really, the trach isn’t so bad. We should just stick with that until she’s older,” but we know we need to give her every opportunity to live a life trach free.
And it’s going to change her face. I love her face. I don’t know how different she’ll look, but most pictures I’ve seen of before and afters, the child looks much older. We’re trying to take lots of pictures and I’ll be taking even more in the next week. And we don’t know how this will affect her ability to ‘talk’ in her little raspberry-blowing language. I looooove her talking. It’s one of the things I know I’ll miss the most if she ever does get the trach out. I’ll be so sad if she stops doing it after this surgery either because of the changed shape of her mouth or pain.
Speaking of pain, they stressed that it’s usually harder on the parents than the child, but the surgeon also said there’s no way to know how much pain she’ll have until we do it. Some kids are in terrible pain doing little procedures, others “you can be moving their entire face and they barely react.” Please be praying she doesn’t have much pain. Or any pain. No pain would be awesome.
Evie will be inpatient for 2-3 days and then we’ll be in Cincinnati for a few weeks, going into the hospital every day to have the screws turned to separate the bones. Once they get it to the right spot, we should head home.
Thank you again for all the prayers and support.