Here We Go Again!! Jaw Surgery #6 (6th and Final??? Fingers Crossed!!)

Hi Everyone!  Thanks so much for coming back to read Faith's blog and follow along as Faith goes through her sixth major jaw surgery and with any luck/skill/prayers, this is the big one to get her trach out after almost 16 long years!  Yes, we are both excited for that possibility as well as terrified and dreading going through it all again.  On Monday (6/20) we had her pre-surgery appointment with Dr. Gordon the same surgeon who did her very first jaw surgery when she was two - thought it would be fun to share the then and now pics...

2009 - After Faith's first jaw surgery

2022 - Before Faith's 5th jaw surgery

So in our pre-surgery meeting with Dr. Gordon he talked about how her CT scans look and showed us the 3D acrylic model they made from the scans - it really makes it easier to understand and talk about where he wants to cut the bones and try to grow more bone.  Here are a few pics - her bone structure is EXTREMELY underdeveloped in her face, so don't be too shocked by these...

Surgery goals / options:

Lower jaw: This part of the surgery is pretty straight forward, same as we've been through before with just the change of the location where he cuts her bone to try to be in a new spot that will grow better than doing in in the same spot as a previous distraction...

 

Right Side: better side, lower mandible has good width/thickness, plan is to cut in front of her first molar (I think) and distract a “country mile” in order to push her lower jaw more toward the left side and align the midline with her face better

Left Side: worse side - where she was missing bone at birth and had a scapula (shoulder blade) graft when she was 5.  Dr. Gordon is very happy to see how long this bone is now - more than double the little piece of bone (maybe 3cm) he originally put in, plan is to cut in front of her first molar and distract to add thickness in order to possibly support future dental implants.

Upper mandible: This is where it get's complicated and Dr. Gordon said he would wait to decide what to do once he got inside and could see things more directly that what he sees in her CT scan.  He explained a couple of options with us, a LeFort 1 which would shorten the length of her front upper jaw - basically removing some of the bone between her nose and her teeth.  The second option is a LeFort 2 or 3 (I have to look it up again) to cut her cheekbones vertically to bring her cheekbones forward, leaving her nose in place.  Since he wasn't sure what he would do before going in, and it's taken me all day to write this, I think I'll just wait to see what he did before trying to explain any more of it.

Feedings: This was another big unknown since Faith no longer has a G-tube.  She quit using her G-tube about 3 years ago and about a year later, after it accidentally came out during some swimming pool rough-housing (!!) we decided not to put it back in and had it surgically closed in Dec. of 2020.  

Because this jaw surgery requires a "Rigid Extraction Device (RED)" - basically a halo that is braced against her skull and has a bar hanging in front of her face to pull her jaw forward, it pretty much clamps her jaw in a closed position where it becomes almost impossible to get any food into her mouth.  I thought we would still be able to do some kind of squeeze bottle feedings, but it came down to a choice between a NG (nasal-gastro) tube or putting a new g-tube in.  After discussing it a bit, Faith chose to have a G-tube put back in - she hated the idea of an NG tube and Dr. Gordon agreed it might cause just more stuff to deal with around her face making her uncomfortable or causing irritation - so he also like the idea of putting a G-tube back in.  I personally hate the idea - maybe because it brings back memories of the YEARS I spent getting up every single night around 3am to prepare and hook-up her feedings and how tiring it all was, or maybe because I remember how much pain she was in after they closed it in 2020.  Regardless, that is the plan and I have to remember it is just temporary - it should come out a month or so after her surgery - so, sometime this fall.

I'm going to stop here.  It's actually after 5 on Tuesday now - and surgery is nearly done.  I will try to post again tonight with details on how it all went.  So far the updates are all good.

Thank you for the many many well wishes and comments on my Facebook page and text messages - the support is amazing!!  💖💖💖