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.

Time

I've just realized that I have neglected Mason's blog and that is one of the cardinal sins of blogging.  "They" say that in order to have a good blog, you have to commit to posting something often.  As most of us know, that isn't so easy when you have so many kids, work and everything else going.

Time seems to find you when you are in a hospital room awaiting the next test, poke, cry, good news, bad news and everything else that comes along.  In the meantime, we are busy leading our lives with what seems not enough time for everything we are trying to do.  It's funny how when you are in the hospital the world just goes on without you and that includes your family.  Everyone else is busy still going to school, doing homework, dealing with the next "crisis", having a great time and even sometimes a bad time.  So how is it that all that doesn't seem to exist when you are in the hospital and all you have is time?

In business, one of the main themes you hear when someone leaves a job that they thought only they could do, is that no one is irreplaceable.  There is always someone to come along that can do your job and maybe even do it better than you did.  There is nothing like hearing, "Oh yeah, we found your replacement and they are doing great!" to set you in your place. I think that theme of "replaceability" translates into aspects of every day life.  As a Mom or Dad, someone else could do your job, maybe not the same, maybe better.  In time, you can be replaced and perhaps even dare I say, forgotten.  So what do you do with the time you are here?  What do you do with the time you spend with your kids?  With your parents?  With your friends?   I think it's not all about how much time you spend with them that makes the most impact but the quality of the time. I think it's easy to forget that when you are running around trying to get it all done. 

For me, reality check comes when it's time for Mason's next cardiology appointment and we are hoping for the best outcome.  All I am hoping to hear is that he has more time- more time before his next scheduled appointment, more time before his next surgery and more time without new meds.  His next appointment is April 27th and I'll be praying to God for more time, and if he gives it to us, I'll be praying that He gives us the smarts to make the most of it!