Sand, Celebration and Surgery!

WE HAVE A SURGERY DATE!!!

NOW THAT WAS EASY!

To be honest, I never even considered ALL the twists, turns and abrupt stops this journey of just getting a surgery date for Tim.  We started this waaaayyyy back on January 11, 2013.  

We knew going into this Tim needed his Fontan procedure done soon, as he was approaching 6 this summer and getting older is not a good thing, when only half your heart has been repaired.  

In a nutshell, most kids in the US have this surgery before the age of 4.  The longer the heart adjusts to life/work load after 4, the more difficult it is to re-train the heart to function after the Fontan is completed.  So the chance for complications after this necessary surgery is much greater.  

So your now asking yourself...."gee, it seems like they should just leave the heart alone then?"  

Good point, however, the heart is working infinitely harder than a normal heart and will give up at some point, much sooner than necessary.  So in order to prolong Tim needing a new heart (transplant), and he will eventually, the Fontan is done to lessen the workload on his heart.  This will give Tim the stamina to be a somewhat normal 5 year old boy.  He runs out of oxygen running to the end of our driveway.  He desperately wants a bike for his 6th birthday soon, but really can't go down the street without a few stops for gasping for air. 

The second part of this discussion is about.....

WHY DID IT TAKE SO LONG???

That is a fair observation.  The short answer is this:

1.  Details and data needed to be gathered on our Arkansas Children's Hospital.  I am obsessive about trusting, when it comes to my kids.  I really do call and ask hard questions from all the sections that will be involved.  The data wasn't bad, but really wasn't favorable to Tim.  AR Children's had not performed the Fontan on ANY child older than the age of 4 and never on a child who was partially repaired in another country.  The element to mess this up was growing!

2. Tim needed a heart catheterization because the echo that was done, left the cardiologist somewhat puzzled as to what his anatomy truly looked like in his chest.  After the cath was done a second possible diagnosis was added.  Tim has a artificial pulmonary artery.  The cath wasn't able to determine if he ever had a pulmonary artery or if his was removed due to it's disfunction in China, many years ago?  So Truncus Arteriosis with a big

                                    ? 

was added to his congenital heart defect list.  He is very complex indeed.

3.  A second opinion was requested by us to one of the top pediatric heart centers.  We chose Children's Hospital of Philadelphia(CHOP).  They are neck and neck for the best hospital for this type of procedure.  This second opinion took longer than expected, but in the end they have a tremendous amount experience with international adopted complex congenital heart defect kids.  We feel much more at ease with this choice.

4.  Our insurance company.  They required detailed evidence sending Tim to CHOP vs AR Children's is the best plan for him.  This is actually being decided as I type this blog.  Prayers they allow this referral to press on.... and Tim be allowed to have the best of care at CHOP..

So our official Surgical date for open heart surgery is:

August 28, 2013 at CHOP.

Are you exhausted yet??? Yeah, its been a journey, like I said!

In other related fun, we took this family on vacation to a beach near Tampa, FL.  

Let's see....

4 days in the confines of our car.... oh yeah, were having FUN now!

7 days on the beach in FL....they kids LOVED the sand, salt and surf!

2 hotel stops....Kate isn't fond of her porta-crib:(

20 or so friends/family member's visiting....so glad to see everyone of you!

1000 hours of sun and fun

1 billion grains of sand, sea grass and shells Tim tried to avoid as he walked on the beach...yeah really!

Turns out the sensory buckets we put our orphans hands in, to grow those pathways in the brains and prevent all the sensitivity to any different texture.....well, I never considered sticking his feet in them??? 

He walked like it was a gravel pathway the 35 feet from the concrete to the ocean.  He worked his way to walking without looking like an 88 year old fire-walking man, but never was comfortable.  

Our 2 year old was absolutely correct in her assessment of herself, she IS a tropical baby indeed!

FIRST 4TH OF JULY!

The little's FIRST 4th of July was a hit!  They loved the fireworks, fun and being as loud as they want to be without being shushed(Tim mostly!!).  This is our last 4th, actively serving this great nation!  So it was doubly special in our hearts!  Retirement and all the stress and hoopla it brings is upon us as of October 1st, 2013.  24 years of the military has been a marathon of it's own!