Back in Boston (for TMJ Reconstruction)

Hi All,

I hope you are all doing well.  We are back in Boston for Harlie's I-don't-know-what-number jaw surgery.  Part of me wants to write for her "last jaw surgery."  But, I have no idea if that is the case or not.  This surgery is basically like a hip or knee replacement - but for her TMJs.  

Just a few more details for those interested...

She had a CT scan months ago, and they used that to fabricate these prosthetic TMJs specifically made for her jaw.  Here are some pics of what they want to do.  I say "want to do" instead of "going to do" because past experience has taught me that things don't always go according to plan.  And part of me is afraid that her jaw has been receeding since her CT scan, and that the custom joints aren't going to fit anymore.  

One of the complexities with her jaw is that while we stretched her jaw bone, called jaw distraction (by breaking her bone, which forced new bone growth, then repeated the breaking every day for several weeks) the soft tissue/muscle, etc. in her jaw might not want to stretch like that. Or that quickly.  And the bone can basically collapse under the tight pressure of the soft tissue.  Think about how braces work, constant pressure, which then changes the bone structure.  

While I feel I'm generally an optimistic person, there is definitely a part of me that is preparing for disappointment.  When we started to focus on her jaw surgically (she was less than two) I would NEVER have guessed we would STILL be working on it twelve years later.  Funny, her very first jaw surgery was done with the intention of avoiding jaw distraction surgery.  Several failed jaw surgeries later, and we had to do one anyway.  She's now had two jaw distractions.  

So, while I want to have hope, I can't forget all the disappointments and re-strategizing that we've had to do over the years.  My brain and heart are often in conflict.  It is super fun to be me.  😉

Anyway, her surgeon is going to cut her jaw like this...

And then move it into a better position like this...

And then secure it in place with the prosthetic TMJs.

The goal is not only to move it left - but more importantly, move it FORWARD.  Moving her jaw forward is what will give her a better airway.  And a better airway is our ultimate goal.  A better airway means that she could breathe without the need of a tracheostomy.  And while I am thankful that the trach has given her life, I long for her to experience life free from it.  

This surgery is our Hail Mary.  There have been zero talks about options if this doesn't work.  I don't think there are any.  So, it feels pretty weird to be in this position.  For so long we have hoped for a trach free life.  To think we might be at the end of the road is really scary.  How is this going to end?  Will it be successful?  Or not?  I'm told we should have a good idea in six weeks.  Ha, my brain is doing it again.  I'm remembering all the times I was really happy about a sign of a better airway.  Like when she could wear her speaking valve a few weeks after surgery in 2018.  But that was it.  No improvement after that.  So, what if in six weeks things look great, but then over time it gets worse again.  Yeah, so fun to be me.  

Anyway, here's Harlie taking a selfie of us at the airport. 

We are now settled in at our regular Air B&B in Boston.  The owners live upstairs and they have a little girl.  When we got in there was a box of chocolates and sweet note from the little girl saying good luck and get well soon.  Awww!  Makes me feel "at home" here!   

Tomorrow we have a long day of pre-op appointments.  And then surgery is Tuesday.  We don't know what time yet.  And we really have no idea what her recovery time is going to be.  

For 13 years I was unable to work consistently.  I have worked part-time for a long time, but I really took the term "part-time" to heart.  I have worked when I could - sometimes five hours a week, sometimes five hours a month.  Sometimes there were months I couldn't go in at all.  

But, the past few years have been pretty quiet medically speaking.  So, in January 2020, I committed to working more consistently and working about 20 hours per week.  Perfect timing for a pandemic when your kids can't go to school and you can't work from home.  😑

Anyway, where I'm going with this is that it is super weird to leave my job and my responsiblities there for an unknown period of time.  Granted, my job isn't critical.  But still, no one else is going to do my work while I'm gone.  So, it just feels... weird.  

Now I am appreciating the position that Tom has been in for so long.  He has no say in when her surgeries are scheduled and he has no idea what his work schedule is going to be like at the time of her surgeries.  He has no idea how long he will be away.  He doesn't know if we are going home together, or if he will have to go home alone and then come back and get us when she's ready.  And when he has had to return home without us - he's had to focus on his work while he was worried about her in the hospital.  And he's been doing this for 14 years!  I think it is amazing that he has done this - with little complaint - and he is still able to do his job and do it quite well.  Love him!

Well, that's it for tonight.  I will write more tomorrow.  Thank you so much for thinking of us!

Much love,

Christy xo