Waiting for Fontan

Hello friends,

This is Jason.  I've been trying to figure out how to explain the most recent update to Sam's Fontan schedule, and it is not simple.  As a result, I've decided to offer three tiers of information; feel free to read whichever suits your fancy.

Short and sweet version: Sam's Fontan has been indefinitely postponed.  He will undergo the surgery in the late spring or early summer of next year, 2015.

Medium, medical version: For a variety of reasons, it is not the most desirable option to introduce a new surgeon to Sam's case.  In order to await the surgeon's recovery and give him a little time back in the operating room--it is also not optimal to have Sam's complex case be among the first procedures back--we would have to wait until around October or November, which, not incidentally, coincides with the onset of cold/flu season.  Because Sam has a relatively small left pulmonary artery, he is likely to have respiratory complications following the Fontan.  Consequently, if we can avoid colf/flu season, we should.  Which leaves next spring.  We do not consider the Fontan an elective procedure for Sam, but there is an optimal window in which the surgery might take place.  At present, we are near the beginning of the window; waiting until May or early June of 2015 puts us near the end of the window.  There are some risks in waiting until then--specifically Sam's body may form collateral veins bypassing his Glenn physiology and lowering his oxygen saturation to dangerous levels; however, we consider the risks to be tolerable in order to avoid the bigger risks of rushing a surgeon or having Sam try to recover at the worst time of year for him.

Literary version: At the end of each of two acts in Samuel Beckett's Absurdist play, Waiting for Godot, one main character says to the other, "Well, shall we go?"  The other responds, "Yes, let's go."  Famously, the stage directions read: They do not move.  This is the great existential dilemma in the play: how can a person act when confronted with uncertainty and an ability to understand his or her role in the world?  The characters, to their great chagrin, make continuous plans to progress, yet they are unable to effect any real actions; instead, they are relegated to passing the time with irrelevant and often ridiculous banter.  So it goes.  Three times now, we have scheduled this Fontan.  Three times, for reasons entirely beyond our control, we did not move.  Now, for the fourth time, we have rescheduled this critical open-heart palliation...it will just be done a full calendar year later than we had thought.  The waiting is absurd.  But we are powerless to change it.  So, all of the measures we took to make this happen now have been a waste.  All of the buildup has been, ultimately, irrelevant.  So we will gather ourselves to wait again.  We will do our best to remain patient.  To pass the time in ways that feel important.  With that in mind, here is a brief update on Sam the person rather than Sam the patient.

Sam is growing and learning just like other kids his age.  He especially loves letters and sounds.  Check out the magnetic board; he just wrote his name for the very first time: S-A-M spells Sam!

When I took this picture the other day, Sam said, "Go away, please.  I'm reading."  How cute!

Frozen Fontan: An Update from Jason

My dog ate my homework.  The cat ate my gymsuit.  My surgeon was in a bicycle accident.  Got any other good excuses why something is happening late? (Don't worry--he is okay and expected to make a full recovery.)

So...I know many of you have been counting on this site as a way to follow the results of Sam's third major surgery, the Fontan; I'm afraid that will have to wait just a little bit longer.  As we were preparing to walk out the door on the way to Sam's pre-op appointments this morning, we got a phone call that Sam's surgeon suffered a bicycle accident over the weekend and has been temporarily incapacitated.  Recovery will take 6+ weeks and possibly then some.

That means Sam's surgery is OFF for Tuesday.  There will be no Fontan this week.  Like Sam's favorite movie, it is temporarily "Frozen"...in suspended animation.

We are currently in the process of following up with Children's Hospital to decide on the best course of action for Sam.  Will we proceed with a different surgeon?  Can it wait until later in the year or even next summer?  How will this impact our ability to work this year?  Sigh...a lot to think about.  Early returns indicate that we will wait until his surgeon has made a full recovery and then proceed with this third and final reconstruction later in the fall.  But, as with so many things in our world, that is a big old "What if?"  We will be talking to his cardiologist again in a couple weeks to reassess and hear the ideas of his full care team.  At that time will we make a "final" decision.

In the meantime, we have a reprieve.  Looks like we can start taking our little bubble boy out in public again.  We're thinking the aquarium since Grandma and Grandpa are in town.  Perhaps we will be able to enjoy the remainder of summer after all.

Anyway, thank you all for caring to read this and keep track of us and of Sam's doings.  We will post again once we know more and have a new plan in place.  Here are a couple of recent photos to tide you over until the next news...

Jason

Here is Sam riding "Sven" from Frozen.  Sam says, "No Sven, we're not going back!  She's with her true love!"

Discovering a Hoberman Sphere:

Taking a walk with Dada:

Our Big Hearted Three-Year-Old

Since I haven't posted since 2012, I thought I might offer a few important updates on our sweet little Sam.  Much has happened--some very bad but some very good.

First, I just wanted to put these two pictures together to celebrate how far Sam has come these past three years:

This is Sam around 10 weeks of age; he was suffering a stroke and a terrifying case of endocarditis. He was about to undergo a very risky and early Glenn surgery.

This is Sam at school just a few weeks ago.  He loves running around outside with his "new friends," as he calls him, and he's a big fan of the slide.

There's so much to update that I'll make a few lists to keep it concise (and then I'll throw on a bunch of pictures).  Let's start with the bad news and then work our way up to the good news....

The bad news:
1. In November, Sam's O2 sats suddenly dropped into the 50s, and we had to call 911 in the  middle of the night.  Luckily, he only had to spend a few nights in the hospital; it turns out he had a cocktail of nasty viruses brewing in his little body.  Some rest and fluids were enough to get him (and Elmo) better.

2. In December, about a week and a half after I had returned to work, there was a shooting at my school, Arapahoe High School (this is Kristin typing).  A girl was shot and killed, and the shooter--a student at the school--killed himself in our library.  Our school is still suffering terribly.

The okay news:
1. Sam was supposed to have a heart catheterization today. This is to help prepare him for the big Fontan surgery this summer.  However, Sam's doctors decided after examining him this morning that his cold would make the cath too risky, and it would be best to wait.  So we went out to breakfast instead and had chocolate chip pancakes.  The cath, by the way, is now rescheduled for June 4--a little less than a week before his scheduled Fontan.

Students--if you are reading this right now, rest assured that it means I will be back at school Thursday and Friday.

The great news:
1. Sam is now a big brother, and he is one great big brother.  His little brother is named Henry, and he is now six months old.

Henry is a mini-Jason and might actually be the happiest person in America.

Henry is obsessed with Sam; if Sam is in the room, Henry has eyes for no one else.  And of course, Sam finds it hard to resist a little human who adores him so completely (as long as Henry doesn't grab any of Sam's toys, which pretty much sends Sam over the edge).

Fascinated by each other

Luckily, the doctors agree with Sam's assessment that Henry's heart is very healthy!

It took four hours to get this picture.

2. Despite all the setbacks, Sam is completely age appropriate in all areas of development--gross motor, fine motor, and speech.  He loves the alphabet, books, and puzzles, and his current favorite movie is Finding Nemo.

It took a good week of practice to hold up these three fingers!

Rolling around in his favorite Buckeye hat

Reading at school

Sam and his buddy, Max!

He's definitely known for his goofiness at school.

P.S. Sam is particularly interested in Nemo's "lucky fin," which, despite the fact that it never grew quite big enough, turned out to be a source of strength for Nemo.