Help Arrives in the Form of Laryngotracheal Reconstruction????

Laryngotracheal Reconstruction...it's hard for me to pronouce or spell much less think about my precious Hayden going through the procedure.  We first began to consider the surgery in December following Hayden's eighth or ninth hospitalization in less than a year.  After countless breathing treatments, steroids, and surgeries, his ENT started to prepare us for the possibility of something more serious.  Eager to get my hands on all the information that I could, I began searching for anything that I could find.  Unfortunately, I wasn't finding much in the form of "mom talk".  I found multiple medical papers, studies, even dr. bios on physicians that had performed the procedure but nothing that told me what to expect as a mom...in terms that I could understand.  So, I'm learning this as I go.  Many things about this scare me to death but I'm getting more comfortable with it each day. 

My goal with this blog is to give other moms out there something to help curb the anxiety that I had every time I thought about his procedure.  I just wanted information and I couldn't get enough of it quickly enough.  I hope it helps someone as they prepare for the same healing that we are praying for with Hayden. 

Hayden was born at 37 weeks and a healthy 7 pounds.  Moments after birth, however, his lungs and heart didn't begin functioning as they should (a condition called PPHN).  He was rushed to the NICU where they discovered that his lungs were underdeveloped in addition to the PPHN.  After a two day roller coaster ride, he was transported by helicopter to Scott & White Hospital in Temple, TX where he would spend the first two weeks of his life. 

Being on a ventilator for any length of time notoriously causes scar tissue to develop in the throat.  Hayden was on a vent for about a week.  When scar tissue develops in a newborn's throat, it causes an already small airway to be even smaller.  Multiple surgeries to remove scar tissue and remove his adenoids have not given the relief that we'd hoped for so we are left with two options...Tracheostomy or Laryngotracheal Reconstruction.  Laryngotracheal Reconstruction involves grafting a piece of Hayden's rib and forming it to fit into his airway.  The graft would then be attached to the base of his airway to widen it and allow him to breathe normally. 

We've chosen reconstruction and have been referred to Cincinnati Children's Hospital for surgery in the next couple of months.  Cincinnati is one of the premier hospitals in the world for this type of procedure.  God has blessed us immensely by providing this option for Hayden and giving us one of the best doctors in the world to care for him. 

Coordinating a procedure like this (from 6 hours away) with a research hospital is nothing short of a frustrating and stressful event but I am doing the best I can to get him there.  I truly feel like a number and completely lost in a crowd.  I know that all will be fine in the end but as you all know it's not easy juggling children, work, and other obligations.  Add that to an incredibly frustrating scheduling process with a facility 300 miles away and I'm sure to break down at some point. 

I can't wait to get through this in a few months and have an even happier (if that's possible!) and healthier baby boy.  He truly is our miracle baby and we are so blessed to have this gift from God.