Upcoming Surgery - February 6th

We are moving forward again on this journey of Faith's to continue reconstruction of her jaw in hopes of getting her trach removed and letting her live a more typical life for a kid. We had her bone graft done in June and now it is time to use that new bone to grow some more bone and give her a bigger jaw. So we have a jaw distraction scheduled on February 6th, along with a tonsillectomy and adenoidectomy. Apparently her tonsils are "huge" and taking up too much space in her throat.

So, Faith and I will be flying out on Tuesday, 2/5, she will have surgery on 2/6 and stay in the hospital for 2 nights, and then we will be in the Ronald McDonald House for 3 nights and flying home on Monday, 2/11.

Faith will have the distraction pins as well as a halo device (called a Rigid Extraction Device or "RED Device") in place for about 6-7 weeks. We will turn the distraction pins every day for about a month and then I will take her back to Cincinnati for another surgery on March 8th for a chin advancement to build more of a chin for her. We are still waiting to see if that will be approved by our insurance as apparently it is usually done for cosmetic reasons although for Faith it is really for reconstructive purposes.

Following the chin advancement we will fly home again to let that heal along with letting the distracted jaw bone solidify before they take all the hardware off a couple weeks later (around the end of March). Right now we are tentatively planning to have a local Denver surgeon do the removal rather than flying back to Cincinnati a third time.

Our primary goal in the timing of this surgery was to not take away another summer for Faith and to make sure everything is done in time to go to her cousin Megan's wedding in April in Branson, MO. But, since we are doing it during the school year, it will mean she is going to be out of school for the whole time. We are working with her school to set up "homebound" education, but that only gives her a visiting teacher 2 times a week for a hour or two at a time. Hopefully she will be able to learn enough to "pass" 1st grade and continue on to 2nd grade (I'm pretty sure they will work with her and us to make that happen).

We have been talking to Faith about the surgery and preparing her, Fred is very good at talking it up and making it just an expected event. She is so brave and asks questions about whether she will be able to eat with the halo device on. Luckily she met a little girl at the Ronald McDonal House last summer who was going through this same surgery and was wearing the RED device and she saw her eating with it on, so we know she can try to eat, although it will likely be messy, which it is now anyway!! She also asked me if she will be able to sleep with the device on, which is a good question since it will probably be pretty uncomfortable. I told her I think we will be able to use lots of pillows to help her find a comfortable position to sleep in.

Here is Ellie and her brother John John, 

and this is the RED device (which is purple, not red!)

I will be posting a "before" picture soon for us to have a baseline to see how much growth she gets from this distraction. I am very hopeful this surgery could be the one to get her trach out, but I think Fred is more cautious thinking she'll have it for many more years still. I should know better than to get my hopes up, but I just can't help it!!

Thanks for reading!
Robin