Friday, March 1, 2013

Game on World

It was this past July 2012 that we were scheduled for the Fontan.  When I say we, it really is that Mason was scheduled, but where he goes, we go.  

Our debate and indecision of where to take him to complete the Fontan was finally ended when we decided that Mason's best chances lie in turning him back over to the surgeon who had already done all this magical work on his heart, Dr. Frank Hanley.  

The kids had been shipped off to Mexico after school ended in May and Ernie and I enjoyed a week in Jamaica during the July 4th holiday.  Just us two..we knew what lie ahead and this break gave us the extra motivation to be even more positive and strong for Mason.

I flew out to Monterrey, MX to pick up Mason so we could head to Stanford again. Jordyn, Matthew and Jaylen stayed in Mexico.  Thank God for my Mom's side of the family..without them things would be so much more difficult.  Ernie, Mason and I traveled to California the 2nd week of July, attended a friend's wedding, gave blood for the upcoming surgery, setup camp in a hotel, rented a convertible Camaro, drove up Pacific Coast highway, visited Hearst Castle and were actually excited to get through the surgery.  If everything went well, the hope was that Mason could live many years without another surgery.

The Fontan is the final stage of the 3 stage surgery for Mason's pallative repair.  This connects the lower vena cava directly into the pulmonary arteries and the end result is that Mason's oxygen should be higher.  After this surgery, his heart will have been rebuilt to give him the best odds of living.  He is the million dollar be accurate it's actually closer to 3 million or so!

On July 18, 2012 Mason went into surgery after being pushed back from the day before.  Minor updates to existing work as well as completing the Fontan circuitry and his surgery went without a hitch this time.  What kept us in the hospital longer was an old demon..the pleural effusion.  This complication is typical with many Fontan's but since he had previously experienced it, the likelihood of having it again increases.  

Recovery went quite well and in short order, in hospital time, Mason was up and about, still hooked up to stuff.  Days and weeks passed and he lost tubes, wires, monitors and one chest tube. The final one, on the left, hung on for what seemed forever.  Here was this kid, walking around Stanford and on occasion, carrying his own chest tube drain..what a sight! 

By August 8, 2012 Mason finally reached the magic number for chest tube volume output and his chest tube was removed.  This after we had to "school" the staff and residents on how to read their new chest tube collection If we would have let them read it their way we could have been let out sooner but didn't make sense to take a chance on him having to be re-admitted.

On August 9, 2012 we were discharged.  We had to remain in the area for a few more days before we could leave out of state. We traveled to San Francisco for an outing and it was fitting to have him pose with the billboard in the background. One more stop in Albuquerque before we finally made it home.  Kids were in school and I had missed Jaylen's first day of kindergarden but we had our little boy back home.

August 19 was Mason's 4th birthday and he wanted to celebrate at Chuck E Cheese. Simple fun.  I made him a dinosaur cake....while in the hospital he became a big fan of Dino Dan, watching several episodes on the iPad.  Days there were filled with mostly routine...xrays, blood draws, echo cardiograms, waiting for the playroom to open, riding in wagons around the floor, going to the family room and eventually being let out to travel to the Stanford cafeteria and gardens.  

Now, it is anything but routine in our home but it never has been and we like it just the way it is.   Physically Mason is doing great and measuring his O2 level tonight, he was between 92-95.  At almost 7000 ft in altitude that is amazing!!  Mason is even in pre-school 4 days a week, partial days and loves it.  

To our friends, The McDaniels, who just found out yesterday their grandson has been diagnosed with HLHS, our hopes and prayers go out to you on your own journey.  

Game on world.