Wednesday, February 5, 2014 you hear what I hear?

Alex recently underwent his sixteenth time of being put under.  Through talking with several people I have realized that many do not even know of the evolution of Alex's ear.  I thought it might be fun to take a moment to reflect on God's creation, Man's creation, and all the in between.

Alex was born with microtia of his right ear.  Basically it is a congenital ear deformity that happens in about 1 in 8,000-10,000 births.  It was a pure surprise for Birch and I (and the doctor).  At first we didn't know if Alex was deaf or if we had done something wrong during his pregnancy that had caused this deformity.  It took about five years of getting educated and several visits to the children's hospitals to find out that Alex could hear perfectly normal out of his left ear and that we had options of external and internal ear reconstructive surgeries or we could do the prosthetic route.  We were not pleased with the visual outcome of the external ear surgeries when we visited Seattle Children's hospital.  Birch and I had pretty much decided that we would go the prosthetic route and had had a phone call with the prosthesis setting up plans for these to happen.

In 2004, we traveled to Salt Lake City for my brother's wedding.  At the reception a couple approached us and said that their grandson had just undergone external and internal reconstructive surgery for microtia.  They raved at the good work of the doctor and how good the ear looked.  After getting in contact with this family we totally changed plans and booked a flight to meet Doctor Grant Fairbanks, Sr. in Salt Lake City.  Alex underwent several surgeries to actually sculpt his ear out of one of his ribs, several skin grafts, and a lot of artistic and medical talent.

Fast forward ten years and lots of surgeries Alex has a darn looking good ear and the capabilities of hearing.  All of his external ear surgeries were done at Primary Children's in SLC and his initial internal ear surgery drilling his ear canal and creating his inner ear parts were performed at Seattle Children's hospital by Dr. Sie.  Ever since the initial internal ear surgery Alex has required almost yearly maintenance surgeries by our wonderful local ENT, Dr. Ryan Black, to re-drill his ear canal and deal with the chronic infections and steno-sis.

Early January 2014 Alex was scheduled for a regular maintenance surgery with Dr. Black to re-drill his ear canal and help with his chronic ear infections, scarring, etc...

Alex and I have discussed many times how we wish that we could invent something new (like a titanium stent) as this is a chronic issue for Alex.  As our doctor (who is a Bishop in a neighboring ward) came in the room for the pre-op appointment Alex briefly shared this desire and a totally visual "light bulb" moment happened to Dr. Black.  He instantly had an idea of a newer product called Propel, a Steroid-Releasing Implant, that was just approved by the FDA for sinuses.

As we watched the preview video we all felt as though we could interchange all the sinus words with "ear canal."  Dr. Black called the hospital as he had just recently ordered the stents and they were not in quite yet. 

We decided to postpone the surgery and then reschedule after the stents arrive.  The stent puts pressure on the newly re-drilled ear canal to help hold it open while it is healing and then releases steroids over a 30 period and eventually the mesh stent dissolves.

How Propel works:

We've been pretty excited and figure it can't hurt to try something different as we know the end result of Alex's maintenance surgeries will be the same as the past five or so. Hopefully our insurance company will agree with us and help cover the stent as it is a spendy little thing. We feel Dr. Black received inspiration for Alex and we're so grateful to have been the recipients!!!

So fast forward to January 27th and we find ourselves back at the surgery center full of excitement to try something new.

 Ready to rock this surgery!
 Alex is now at peace with being put under and no longer needs the "silly med" Vercede to ease his fears.
 Sure love this kid!

 I used to always climb in the pre-surgery chair with Alex to keep him warm and calm his fears.  I no longer fit in the chair and Alex doesn't seem to need me quite as much as he used to.
I posted the following on facebook right after they took Alex back for surgery:

Bam! Surgery time is on. Excited about this experimental surgery of putting a newly approved sinus stint in Alex's ear canal after it is re-drilled this morning. Alex was super stoked when they let him keep his undies on for this surgery. Birch and I were just commenting to each other how much easier this going on Alex's sixteenth surgery. Was so much harder back in the day when he was wheeled away in the red wagon drugged on the "silly medicine." Feeling blessed for modern day medicine, inspiration from God on a new idea, insurance, a great doctor, and a brave son!!

Three hours later Dr. Black finished stitching up Alex and came to give Birch and I the surgery update.  After getting in the ear Dr. Black decided that Alex had so much nasty scar tissue that he decided to not only re-drill his ear canal but also put in a new skin graft from Alex's neck.  Dr. Black said he actually broke the first drill bit as he was aggressively drilling away.  He attached a facial nerve monitor as he drilled to make sure that he wouldn't drill into Alex's facial nerve and cause permanent damage.  The end result is an ear canal almost one centimeter in size compared to the tiny pencil lead size one he has been sportin' for several years.

The recovery was a bit rough with vomiting and feeling all around lousy.  Alex ended up staying home an additional day of school but was feeling mighty fine by the end of the second day.

We have yet to know if the stent is doing it's job (holding the transplanted skin around the newly drilled ear canal and providing pressure thus keeping the new ear canal open while it heals).  The stent would normally dissolve in thirty days but since we are using it in an alternative form (perhaps for the first time ever) we do not have any precedence to compare it with.
 This diagram shows the stent applying the pressure to his ear canal (well, this is actually a sinus)

We're praying that this surgery provides a little break from the yearly maintenance surgeries.  Wouldn't it be great to go like two years??!!!  Even more we would love it if Alex could actually benefit from his ear canal and hear out of his ear.  Ahhh, the perks of having hearing out of both ears!!!

We're grateful for all the love and prayers that have been sent Alex's way!  How blessed we are to have insurance (even if it isn't as great as it used to be pre-Affordable Health Care Act)!  What a blessing it is to have a doctor that allows God to guide his hand and mind!


Fowler family said...

This was so neat to read. Totally fascinating. His ear looks amazing. I hope the stent works well and you guys can have some longer breaks between surgeries/stent upkeeps.

Your journey reminds me of the journey we're going through with our boys. Actually I'm flying out to Utah next week with Johnny for a procedure at Primary's. Looking forward to the day when surgeries are all done and check ups far between. Love you Dittos!

MaryJane said...

Thanks for the background info, Sara. What a long path you have been on. Sorry Alex won't let you in the chair with him anymore. Sad that they have to grow up! I must say, though, he is turning into a handsome, self-confident young man.