The Jaw Distraction Surgery Details

Since I began writing this blog, I have learned that many of you really enjoy the meaty details about the medical stuff Kyleigh is experiencing.  I love these details too but I thought most people cringe at the thought of incisions and tubes etc.  Not you guys!  So if you are one of the "normal" people that don't want to know the details of Kyleigh's upcoming surgery, you should know it is not scheduled yet and you should STOP READING NOW!  For the rest of you, here is what we know.

Since Kyleigh has a tricky airway and has had difficulty being intubated, 2 Ear, Nose, and Throat specialists; Dr. Hamming and Dr. Walner, will be in the operating room to intubate her.  Also, due to the diffculty with intubation, they want to place the G-Tube during this surgery as well to avoid having to put Kyleigh under again.  In order to do that, the general surgeon, Dr. Geissler, will be there too.  Then of course, Dr. Vicarri and his plastic's team will be there for the jaw distraction surgery.  So if your keeping count, that's 4 surgeons that need to come together for this surgery to happen.  If you have ever tried to make an appointment with a specialist/surgeon you know how difficult their schedule's are so this is not going to be easy.  In addition, we want to wait until after Kevin's birthday (Oct 23rd) before we focus on Kyleigh...again.  So once the surgery is scheduled, I will post a quick blog to let you all know and to ask for your prayers!

The surgery will be done in 3 steps:

Step One:  The ENT doctors.  They will use fiber optic tubing and their new knowledge of Kyleigh's tricky airway to place a tube down her nose and into her trachea to secure her airway.  They will go down her nose so that her mouth and tongue are clear for the jaw surgery.  Once the airway is secure and the machines are breathing for her, they will progress to step 2.

Step Two: General Surgeon.  Dr. Geissler will come in and place the G-Tube.  He will insert a small tube with a camera as well as a small line with forceps on the end.  He will look for the perfect section of Kyleigh's stomach and pull it to the surface of her abdomen.  He will make a second incision in the stomach lining and insert the G-Tube.  The G-Tube will be stitched into place and secured.  On to step 3.

Step Three:  Jaw Distraction.  So this is technically step three but this portion is done is stages.  While in surgery, Dr. Vicarri will make and incision at the temporomandibular joint (TMJ).  This is where your lower jaw meets your skull.  Essentially he will break the bones on either side and separate them from the joint.  Two metal separators will be inserted (one on each side) and secured to the bone in her jaw.  Once this is done, everything will be closed up leaving only 2 small plastic "flaps" sticking out behind Kyleigh's ears.  These flaps are how the distraction occurs, which is the second portion of this surgery.

After surgery, Kyleigh will remain intubated for at least 5 days and in the Pediatric Intensive Care Unit for at least 2 weeks.  During the 5 days she is intubated, Dr. Vicarri will come in and adjust the 2 "flaps" to continue the distraction process.  The goal is to eliminate the current 1cm deficit.  Dr. Vicarri told us that he will intentionally adjust past the 1cm deficit to leave room for typical growth of the upper jaw.  Fortunately, during the process of inserting these distractors, the inferior alveolar nerve, which is a branch of the mandibular nerve, is "insulted" and basically shuts down temporarily.  This will cause Kyleigh's jaw to go numb meaning she shouldn't feel ANY pain!!

This jaw distraction is a minimum of 2 procedures.  The first procedure is what I described above.  The second procedure will happen about 3-6 months later.  Once Kyleigh's bone is fulled healed, Dr. Vicarri will go in and remove the hardware.  I think this should be a pretty simple procedure since ideally Kyleigh will then have a fairly typical airway at that point.  The reason it is a 2 procedure MINIMUM is because there is a possibility that when "guesstimating" how much to over compensate for upper jaw growth, Dr. Vicarri may go to far and problems can occur later in life creating a need for this procedure to be repeated.  We will hope and pray that doesn't happen.

I'm pretty sure I mentioned this in my previous blog, but just in case, here are the reasons why this surgery is so needed and is so important to us.  The biggest reason is that this will basically eliminate the problems Kyleigh has had with her airway and by doing so, should eliminate the need for oxygen at home and the discussion of the trache can finally be off the table.  The next great thing is that Kyleigh will no longer have her NG-Tube in her nose because the G-Tube will now be in her belly.  In case you aren't aware, this is a HUGE deal for us (and Kyleigh) because she has had a tube in her nose and tape on her face since 12 hours after birth!!  So no oxygen tube and no feeding tube on her face, with a new jaw...she will look like an entirely different baby!  Lastly, Dr. Vicarri feels that the recessed chin is probably the biggest reason Kyleigh is not eating by mouth.  The surgery will cause a pretty major oral aversion and we will have a ton of work to do but it is likely that Kyleigh will eat by mouth!!

So as you can see, we are in for a long and crazy ride but the benefits and outcomes of this are HUGE!! We are scared to death but ultimately can not wait for this surgery.  Your prayers have meant the world to us and our little princess is proof of the power of prayer.  Please continue to pray for Kyleigh and for us to have the strength we need to get through all that is about to come our way!