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.

Home!

I think it is safe to say that all of the Leclaires are quite happy to be home.  We walked in the door about 30 minutes ago.  We are also quite tired, so I'm going to keep this blog short.  I posted below a few pictures taken before the cath that I couldn't upload to my computer until now.

Thanks again for all of your kind texts, e-mails, blogs, phone calls, and good thoughts!  We are lucky to have so many people taking such wonderful care of us.

Sam, or Mrs. Roper?

A very hungry Sam waiting for the cath to begin

One of our few family portraits!

Happy to be reunited with his tunes

All Done

Sam's cath is over!  He did great.  Everything went pretty much as expected, and the doctor seemed pretty happy with Sam's overall heart function.  While his left pulmonary artery is still stubbornly small, Sam has good pressures and a large right pulmonary artery.  According the cath doctor, Sam is a likely candidate for the Fontan surgery--the third and hopefully final major open-heart surgery.  Also, the cath doctor is hoping that Sam will not need further intervention until the Fontan.

Here is a picture from the cath--you can see the difference in size between the left and right pulmonary arteries (dyed for the cath):

What is perhaps most alarming about this picture is that there appears to be a small, dark swan swimming around in Sam's upper ribcage.  Hmm.

Because of the discrepancy between his left and right pulmonary arteries, however, Sam will likely experience some complications after his Fontan and have a lengthy hospital stay (at least a month), but he is squarely in the candidate range.  He just needs to keep growing and gain about five more pounds.  In the world of hypoplastic left heart syndrome, this is what we call cautiously optimistic news.  My favorite moment with the doctor, though, was when he told us that Sam is a "very popular guy around here."  He is a pretty popular guy with us, too.

Right now, Sam is playing with his portable DVD player.  He just sucked down some Pediasure and seems to be feeling alright, though a bit out of it.  His many "friends" in the cardiac progressive care unit were quite excited to see him, and even more excited that he managed to stay out of the hospital for so long. With a little luck, in a couple of hours he'll snuggle up with Wubbie, get a good night's sleep, and go home tomorrow so he can get back to his favorite hobby: sitting on the cat.

Thank you for all of your prayers, wishes, and good thoughts.

Late, but finally on our way

Well, after three and half very long hours of entertaining a very hungry and dehydrated one-and-a-half-year-old in a tiny hospital room, the cath is finally underway!  Here is the news we have so far: They are going to balloon both the left and right pulmonary arteries because both are narrow, but they are not going to coil off any collateral veins. Here are a few pics of the fun and excitement of the waiting room:

Wild rides in the stroller while waiting for the cath

Being entertained by Smithy

Jason and I in our HAZMAT suits--ready for Halloween!

Jason and Jeff snuggling up with the crossword

Hello?

Jason was rummaging obsessively through our lower kitchen cabinets.  “So I’ve looked everywhere,” he said, “and I still can’t find it.  I looked in the T.V. cabinet, in his toy baskets--” And here I stopped him, because I always like to be the one who really uncovers the mystery.  While Jason did appear earnest in his search for our missing home phone, I’m the one always paying attention to where Sam’s little hands hide things.  When Sam walks around, for example, shaking my green tea K-cups, I take note of whether they wind up in my measuring cups, under the couch, or, his personal favorite--in the chip and dip fiestaware.

“Did you look in the shoe basket?” I asked, and he looked at me, saying, “The shoe basket, the book basket, the hallway closet, although I don’t know how he could actually open that, under the kitchen sink, under the bathroom sink.  I can’t think of any other place he could have possibly hidden the phone.”  I had to admit that he had been thorough in his investigation.

“Can you think of any other places?” he asked, and again, I had to admit that I couldn’t.

At that moment, our primary suspect came stomping through the kitchen, holding the TV remote control to his ear and pretending it was a phone.  Babbling in some elfish language, he seemed pretty happy with whomever was on the other line of this imaginary conversation.  Then, without looking up at Jason or me, Sam marched over to the trash cabinet, opened it up, perfunctorily dumped the remote control inside, closed the door, and wobbled away humming “Twinkle Twinkle Little Star.”

“Do you think that’s what happened to our phone?” I asked Jason.

“Could be,” he said, rubbing his jaw.  “Could be.”  Trash day was yesterday, and the phone had been missing for a week.

I watched Sam suspiciously as he picked up my cell phone from the coffee table.  Just two weeks ago, he figured out how to unlock my phone and sent out his very first text message.  It was basically the isolated letter “q” sent in about eight consecutive texts to a very understanding man in our English department.


Luckily, Sam had only succeeded in absconding with the home phone, not our cell phones. This was especially important this week since we had been waiting for a phone call from Sam’s cardiologist, Dr. Buckvold.  I still feel shy about calling her “Shannon,” even though that’s how she introduces herself when she calls and how she signs her e-mails.  She just seems like far too important of a person to be called by her first name.

We were waiting for her to call and let us know if Sam’s cold was going to be a major issue in his upcoming heart catheterization, which was now less than a week away.  And Sam, to throw in a little extra drama, had been coughing up a storm...not really the best scenario for a one-and-a-half-year-old about to undergo general anesthesia for five hours and rely on a ventilator to breathe.

But after a hurried trip to Sam’s regular pediatrician the next day and an evening phone call from Dr. Buckvold the next night, I felt slightly reassured about Sam’s catheterization.  Slightly.  Basically, we all came to same conclusion that with flu and RSV season coming quickly upon us and Sam in daycare, this might be our best shot. As long as the anesthesiologist was game, the cath was still on for Monday, October 29 at 10 am.

Now, as I sit down at the kitchen table to type this, it’s the night before Sam’s cath. Jason is loading the dishwasher, I'm trying to put off packing up Sam’s books, toys, and pajamas for our hospital stay tomorrow, and I'm realizing that I have been out of touch with just about everyone.  I didn’t update the blog for months.  I forgot to tell most people in my department about Sam’s cath.  I also forgot to tell most of my friends.  I have neglected that lifeline between our crazy hypoplastic left-hearted world and the normal, double ventricle-hearted world.  

And it’s not because Sam probably threw away our phone.  It’s because I have had the pleasure of life away from Children’s Hospital for months and months now, and I almost forgot that we--all three of us--are patients there who are are lucky enough to get extended vacations into the real world.  I almost forgot.  

But the mother ship, through daily phone calls and detailed instructional letters on when Sam needs to start fasting, when we check in, and what we need to bring, is calling us home. It’s time to pack. It's time to go back.  Most importantly, it’s time to reestablish our lifeline to the outside world.

So, if you are still listening, please stay tuned, and we will keep you updated on Sam’s progress tomorrow as he undergoes his second heart catheterization.  We’re hoping they can open up his tiny left pulmonary artery.  We’re hoping his heart function is okay.  We’re hoping like crazy that he’s a good candidate for the third major open heart surgery (the Fontan), because it’s his best shot at a life.  Mostly, we’re hoping that each time the doctor comes out to update us in the 3rd floor waiting room, where we do crosswords and hold our breath for five hours, that she gives us good news about the fate of our beautiful little singing, dancing, kiss-blowing phone thief.

N.B. If you're still wondering about the fate of the missing phone, by the way, I have some breaking news. Yesterday, when I slipped my right foot into my favorite gray boots, my toes hit something hard.  Quickly pulling out, I was surprised to find that inner cave of my boot was glowing electric green.  And there, of course, was the long-lost, left-for-dead phone, still holding onto the last of its battery charge. 

Jason and I weren’t the only ones excited to find the phone.  A few hours after putting the phone back on its charger, I walked into the living room to find Sam happily reunited with it.  With a glowing face and heavy breaths, he kept punching in different combinations of numbers, then pausing to hear the outcome, like he was trying to open up some kind of connection to a world he knew was listening.

Footnote: Sorry for the lack of recent pictures. Sam seems to have the same predilection for the camera as he has for the phone, so it's nearly impossible to snap a photo before he grabs the lens. Most of my pictures come out like this: