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 man...to 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 boxes..lol. 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.

Superboy

October 18, 2011

Daddy, Jaylen, Mason and Mommy flew to UNM to Mason's cardiology appointment.  He was such a good little boy!  He did everything he was asked, without hesitation.  In the above photo he is getting an electrocardiogram and as you can see he was as happy as can be. 

For those of us who have never experienced painful surgeries or spent much time in the hospital, it can be hard to comprehend why there would be any difficulty in such routine tests.  It's often called the "blue" glove syndrome.  (or purple as it was known at Stanford) After being through such painful experiences, these little ones are afraid of anyone wearing gloves.  It's not just the white coats, it's the nurses, echo techs, radiologist, urologists, blood techs, etc that come around with those gloves.  Once they're in sight, it can only mean another round of testing for one thing or another.   The best part of having been away from those days is that Mason has completely let go of those fears.

As for his tests, everything looks as good as it can be.  His echo shows his right ventricle working, while his left is a small, empty chamber; still and lifeless.  His tricuspid regurgitation is about the same as it was before.  He is 14.5 kilograms with socks!  The goal is to reach 15 kilograms, as this is the magic number for which candidates for the Fontan need to arrive at.

Sometime next spring we will have to have his heart cath done.  This evaluation will determine whether or not he is a good candidate for the Fontan.  The Fontan will be the last of the staged surgeries and will connect the lower vena cava directly into the pulmonary arteries.  This final stage will pump all his blood into his lungs first to pick up 02.  The result should be that his oxygen saturations will increase. 

For those of you who aren't aware, there is no fix for what he has.  Once he is done with the Fontan the surgery, they will not have "fixed" anything.  He will have a single ventricle working in his heart and blood flowing directly into his lungs first..this is nothing like us "normal" people.  It is called a pallative repair-it allows him to live. 

There is no guarantee he won't have another surgery or won't need a transplant at some point.  In fact, the oldest survivors of these series of surgeries are in their twenties and there aren't a ton of them!  Dr. Norwood pioneered the series in the 80's and each of these little patients present their own oddities.  It is not a simple fix...but I guess there aren't many things in life that are simple.    That's what makes us so interesting.

Ahh..the eighties..what a great time.  I would have never imagined we would have such a beautiful boy that God has graciously entrusted us with.  I wouldn't go back to save the world.........

No time to waste

Birthday #3 was here in no time.  We haven't even given much thought to all the events in the past.  For me, they aren't even vivid memories I try to forget.  They are simply times past for which I am thankful that God gave us the strength to get through.

These days life is pretty much extraordinary...extra ordinary in that we have been so fortunate to have Mason as healthy as can be.  We don't worry or wonder if he can do something or whether we can take him somewhere.  We just do.

Later this month we will take Mason up to Albuquerque for another checkup and echocardiogram.  We hope to see that things are working just like they should in his little re-built heart.  Each of these "normal" visits gets us closer to his next open heart.  It will be so difficult to turn over our beautiful boy over to the surgeon..he's going to wake up and wonder why his Mommy and Daddy let this happen to him.  Thinking of that breaks MY heart...

Thinking back to when Mason came back home from his Glenn in 2008, he was hooked up to oxygen 24/7...we took him to church, to the store, to the kids games, to just about everywhere we could.  His blue little face had the sweetest little smile.  It still does today...

Mason riding the Rail Runner to Santa Fe  September 2011

Big Boy

Mason had his most recent cardiology visit on 10-26-10 in Albuquerque.  Here he is getting an echocardiogram of his heart.  From what we were told his function looks good and the leakage in his valve isn't any worse.  He was such a good boy and did everything he was asked.  All the fears from being poked & prodded not that long ago have seemed to disappear.  The bad news is that we will have to prepare ourselves to make a decision on where we want to take Mason for his Fontan surgery next year.  It is so hard to imagine that we have such a perfect looking little boy that will HAVE to have another open heart.  If I could only give up something of my own so that he wouldn't have to go through it I would.  Every little moment with are with him has to be cherished. 

Mason's cardiologist says she believes that we just have to pick someone we trust and then just go with their recommendations.  As Ernie pointed out, there aren't a hundred Dr. Hanley's that will be there to take care of him and we have to weigh all our options.  We know the best thing would be to have the same surgeon operate, right?  I guess we know, actually, we don't, that's just what they tell us.  What we do know is that we have faith that God will guide us to make the right choices.  One I can't say we are ready to make right now. 

The Big 2

Our beautiful, little boy is pure heaven on earth and just hit another milestone-he's 2 years old and doing great.  This last Saturday we all traveled to Albuquerque for the LPCH-UNM family picnic.  It's filled with little ones who have traveled to Stanford from NM for heart surgeries.  What a great thing to see so many children given a chance to grow and experience this wonderful world.  It truly is a great time to be alive.

Mexico

So the kids are in Mexico-including little Mason! The kids, my Mom and I left to Monterrey on June 17th and I stayed a few days to make sure Mason would be ok.  I really didn't think he would have any problems but it made me feel better going & I love going to Mexico.

My aunt, Magdalena, who is a retired pediatric charge nurse, has taken Mason into one of her Dr. friend's clinics to check his 02.  He was between 88 & 89%, which is fabulous!  The lower elevation seems to have made a difference in increasing his 02 sats.

Ernie finds it so important to have the kids learn Spanish that he is all for having them go each summer as I did when I was young.  The food, the culture, the buildings, the landscape are all so inviting.  Then you have the norm-like the Home Depots, the Chile's, the KFC's delivered to your door, if you please.  It is simply the best of both worlds and I wouldn't mind living there. 

In the meantime, Ernie & I are basically like newlyweds, just the two of us.  Sure, Michael is here but we just take off whenever we want-no real schedules, no shuffling kids, no medications to give, no listening to arguments. While we truly love them all, we are enjoying that new found freedom. Ernie flew us to Las Vegas for the 4th of July holiday.  Although I am still apprehensive about flying, it was great to be there in just a mere 3 hours or so.  We staked out a little piece of concrete in front of Cesars and watched their beautiful fireworks display.  Too bad the kids weren't here to see that-they would have loved it.

Just a week before the kids left we all drove to Disneyland and Vegas.  I think it was a perfect road trip but my other half didn't seem to think the same.  The kids actually did wonderfully while watching their DVDs but for Ernie, he felt the road trip was too long.  I have to remind him that he has to find the good in everything and to me it was great that we had a new vehicle and that we were able to take the time to take the kids on a wonderful adventure.  The most enjoyable part of Disney is that we were able to do almost all the rides in one day.  Sounds impossible, but I described Mason's condition and we were able to get a Guest Assistance Pass.  This allowed our entire party to be placed at the front of the line and we waited only a few minutes for the majority of the rides.  It was perfect as Mason loved each and every ride and didn't get overheated waiting in the sun.  We made some time to visit the ocean but with it's frigid waters, Mason didn't really want to get in for long.  His one venture in the water caused his lips and fingers to turn purple and his body to shiver.  He was such a die hard as he didn't want to leave and was content to dig in the sand with Jaylen. 

I just have to keep saying it in almost every post.. God is so good.

Ordinary Day

Mason had a simple cardiology visit on April 27th!  A little crying because of the nurse and her probing equipment but he looked so darn good that the cardiologist felt he was doing well enough to leave things alone.  No changes in meds, no echo.  From our last visit, they had scheduled to have an echo done up at UNM on this visit, but apparently we will be waiting to have it done in October instead.  God is so good! 

We flew up to Albuquerque in the morning and since the visit was so short we stayed until the evening and flew back home the same day.  While passing near T or C the full moon lit up the lake and the glow just lit the way.  It was like a little mirror on the ground relfecting the mountains and moon.  We did have a a little distraction though. About 45 minutes in the air Mason got upset and threw up!  It was just what he needed as shortly after he fell fast asleep.  It wouldn't be our lives if something a little out of the "ordinary" didn't happen though.  I'm just so thankful for it all.