Upcoming Jaw Distraction

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.


2 thoughts on “Upcoming Jaw Distraction

  1. You don’t know me, but I’ve been a reader since December. My son is medically-complex and a friend sent me your blog as there are a few similarities between our kiddos.

    Let me first say, my son had a jaw distraction on July 10, 2012 and it was one of the VERY BEST decisions we’ve ever made for him…and we, too, have been through a lot, so for it to rank that high is a big deal 🙂 Post-distraction, is breathing was much less labored, we were able to take him off his supplemental O2 during the day (he still wears his cannula at night and when he’s sick or teething like crazy…he cannot/does not swallow) and he seemed so much happier.

    Yes, his sweet little face changed some, but it wasn’t all that dramatic since we were seeing him on a daily basis and the change was so gradual. His jaw is still small and a little retracted as it was dramatically retracted pre-surgery.

    Lastly, I have to ask why the physicians are doing the daily distracting? We were given the option of doing it ourselves and gladly jumped at the opportunity. Super creepy? Yes… But it beat daily trips to the hospital where we were risking infection.

    You’re doing great and if the physicians say this is best and you know in your mind that it’s best, then I’m praying whole-heartedly for a smooth, uncomplicated process.

    Here’s a link to one of our blog posts — scroll to the bottom to see a “before & during” photo of my son’s distraction process. We had both linear & tilt movement, so once we worked on the tilt, the linear progress pictured wasn’t quite as “impressive.” http://nathanandjessie.blogspot.com/2012/07/ortho-ent-neuro-and-before-after.html

    I’m sure this is the longest blog comment known to man, but I just wanted to let you know that I care and will be praying for your family.

    1. Thank you for commenting! It is so encouraging to hear from other parents who have been through it! And it’s good to hear his face wasn’t changed so drastically! Since we live so far away from the hospital (10+ hours), they wanted to be able to see her and decide when to stop the distracting. It sounds like they may move her almost too far forward to ensure she gets a good airway and then reset it back when she’s older if that’s necessary (I hope it’s not!). I imagine if we lived close by, they would just have just come in every so often to check progress, but it’s just not an option with the distance. Can’t wait to read your blog!

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