Peter's Jaw Reconstruction - Update #1

Peter had his last major jaw surgery when he was about 3 years old. Since then we have been in a "wait until he's older" honeymoon period.  He was decannulated (trach removed) after the jaw distraction surgery, but his trach stoma never closed.  Every ENT we consulted over the years was reluctant to close his stoma because they knew Peter would be having more surgeries (and likely need a trach placed while under anesthesia).  

So, we've been in this strange holding pattern where Peter has not had a trach tube in since he was four, but he has never had the stoma closed. Removing the tube helped Peter get healthier (an end to the recurrent pseudomonis infections), and he no longer needed oxygen while sleeping.  Over the years, however, his upper airway has gradually become narrower to the point where he relies completely on the trach stoma.

When Peter started high school, we began to research his options for jaw surgery with the ultimate goal of securing an upper airway.  We elected to forgo another jaw distraction and instead have a complete jaw reconstruction that includes placement of a custom designed titanium TMJ implant.

Once the decision was made, the first step toward reconstruction was orthodontia.  Peter had his second round of braces put on in May of 2016.  The second step was a soft-tissue graft surgery that was done in January 2017.  Peter's surgeon wanted to add soft tissue around his left mandible where the titanium implant will be inserted.  Tissue was taken from Peter's inner thigh.

We are now days away from the complete jaw reconstruction surgery that is scheduled to start at 7:30 a.m. on June 13, 2017. This surgery will take 8-9 hours and involve craniofacial/plastic surgeons, ENT, neurosurgery, and many other staff.  Peter will have his jaw wired shut for two weeks.

This is the longest and most complex surgery Peter has had, and we have been talking about it for nearly his entire life-- we just never knew what form it would take or when and where it would be.  It seems surreal to finally be within days of this event, and I can't even begin to explain the emotions I am feeling.  I will miss his handsome face, but I know how excited Peter is to see the changes.

We've were fortunate to tour the facility making Peter's custom implant while we were in California last February.  We learned about the design and manufacturing process, which helped Peter feel comfortable about the surgery.  They have also generously shared Peter's 3D images and implant design as it's progressed.  It is comforting to know the people behind the design and engineering and how much they care about their patients.  

Peter & Dede Touring TMJ Concepts in Ventura, CA

If you wish to follow Peter's #29th surgery, we will be posting updates on our social media pages (links above) as well as updating this blog periodically.   To show your support, post on our social media pages with #PetesBand in the comments.

See you on the other side!