A tough pill to swallow....

Hi little buddy,

Sorry we haven't written much the past few days.  Yesterday mommy and daddy literally had a line of people waiting at the door to talk to us and it's been pretty much like that since Saturday.  All of those people were coming to talk to mommy and daddy about you.  A few of the doctors even came in over the weekend just for you.  See you've made quite a few friends throughout the hospital and so they all wanted to weigh in on your status.  It's amazing what an impact one little boy can have on so many people.  Unfortunately most of that talk centered around a topic that's been mommy's biggest fear since the week after your heart surgery.... a trach.  Every time mommy thinks about that word she gets a lump in her throat and has a hard time swallowing.

After our super scary blue episode last Wednesday mommy and daddy got pretty insistent that the doctors do whatever they needed to find out the root of your breathing problems.  On Thursday the doctors did a test called a flexible bronchoscopy.  That test allows them to watch what happens throughout your airway when you breath.  You have had bronchs before but they have always been when you had the breathing tube in with the purpose of cleaning gunk out.  This test was a little different.  You didn't have your oxygen on and you weren't sedated.  They were worried you wouldn't tolerate it or cooperate but they were pleasantly surprised that you were an all-star  (mommy and daddy aren't surprised in the least).  The test showed that when your little chin gets tilted down at all the top of your airway closes off.  The fancy word for this is laryngeal malaysia. Another term for this is "floppy" upper airway.

This sounds pretty scary and I imagine has been terrifying for you the past 3 plus months.  All of the "episodes" you have had are most likely related to the fact that no matter how hard your little lungs worked they couldn't get air up or down.  I can't imagine how that has felt and I'm so sorry we haven't figured it out sooner.  Now that we knew the culprit we had to talk about the solution.  That part was actually a pretty short discussion.  There isn't a solution.  Most kids outgrow this condition with time.  Kids with CHARGE syndrome take an extra long time but it is possible.  There is a fancy surgery that can fix some types of laryngeal malaysia but not for the severity that you have at this time.  That leaves the only one option, bypass the problem which equates to getting a trach.

Mommy and daddy were very leery of this option.  We knew this meant any entirely different type of life and level of care for you for many years.  Mommy and daddy are more than willing to get you whatever kind of care you need but we wanted to make sure we were making a decision that left you the ability to have a happy life.   I won't rehash all the specialists we met with and the specifics of what lies ahead for you with each of them (we'll face those when we get there) but I will tell you the basic summary.  First, you have a heart that is working extremely well.  In fact they said most kids in the ICU wouldn't have been able to push through so many of these episodes without more problems and make it where you have.  Next, you have a good set of lungs.  The fact that your lungs keep bouncing back from these episodes and have supported you off the vent for so long is impressive.  Lastly, you have a smart little brain.  All the pictures they've taken and exams they have done show you are developing impressively well considering all you have been through and how confined you have been to the ICU.  You are such a little miracle Connor.

So today you went in for what mommy calls the ENT buffet of procedures.  They cleaned out your ears and put tubes in to drain the fluid.  They re-did your hearing test which showed about the same results.  The hearing in your right ear is moderately impaired and your left is severely to profoundly impaired.  This sounds scary but mommy and daddy are going to work really hard to get you all the help we can for that.  Next they looked in your nose which was still clear and opened but they dilated it to make the hole a little bit bigger.  Next they clipped the part of your tongue that attaches to the bottom of your mouth because mommy noticed you were a little tongue tied.  Lastly they took another look at your airway and put in the trach.

Whew.  You must be exhausted.  I'm tired just thinking about it.  It's a good thing that you are the toughest little boy I know.  Now you are back in your room and resting quietly.  As of now you have to be back on the vent hooked to the trach.  The doctors hope is that they can wean you off the vent and that you won't need it at home.  Mommy and daddy are going to focus all of our prayers on that for now.  For the next few days we just want you to rest and heal.  Let us worry about next week, next month, and next year.

I know you can't be happy about that tube under your neck but try to hang in there.  The doctors, nurses and therapists tell us that kiddos adjust very quickly to them so give it a try.  Mommy and daddy are trying to swallow the tough pill that is your new trach.  We hope and pray this is a way to help you breath easier and get home but most importantly enjoy life.  Connor we love you more than anything and are your biggest fans.  Sweet dreams little superhero.

I love you
-Mommy