Extubated

As of a little over an hour or so ago, Sam was extubated. No more breathing tube!

I want to say two things before I try to get some much-needed sleep:

1) Thank you all for your thoughts today! I'm always amazed by how inspiring Sam's story is to others; he's an amazing kid, and I know he would appreciate all the good thoughts people sent his way today.

2) I'm also amazed at how quickly long-unneeded habits can return. I find myself repeating the habits--habits that I'd forgotten I'd even developed--that got us through this the first time around, over four years ago.  We set Sam's room up identically; we set the "sleep room" alarm reminding us to call for a room each night (turns out I still had the phone number in my contacts list); we follow the same patterns of shift-taking so that both Kristin and I can each sneak in bits of rest throughout the day; we practice tunnel-vision, almost not even seeing the other patients who, while we care about them, can't earn our attention in this moment.  It's remarkable how quickly we remember how to endure.

To endurance,
Jason

Breathe

Okay, surgery is done. Surgeon said it went well. Anesthesiologist agreed.  Will be another hour or so before we get to see the little guy. Now waiting for the follow-up.

Still going...

Fontan is proceeding apace.

They are just finishing the connection from the IVC to the pulmonary artery. Some work still remains, but so far, so good...

We are "Go"

This is Sam on the way to his Fontan. Pretty cool kid, huh?

It's 8:06, and he's been in the Operating Room now for about half an hour.  We expect the whole process to take on the order of 4+ hours.  Of course it depends on how things go.  Importantly,  however, we are go...

Thanks for keeping up with us! More updates to follow...

If you'd like more frequent updates, "like" the facebook page: "Sam's Heart Journey." My wife will be providing updates there.  Sigh...here we go...

NASA: Give me a "Go - No Go"...

It's game day...

I've often likened this moment to a NASA mission: if conditions aren't absolutely perfect, they won't launch.

Today's complicating factor: following Monday's cath, Sam developed a slight fever (100.4).  This is not common. It's not really uncommon either.  Which is confusing.

Doctors want to be sure that this fever is cath-related rather than the start of a new illness, so they will do a physical examination and a blood test (looking for new antibodies) before surgery this morning.  If it is as we suspect--minor fever in response to cath--we go; if it seems to be the start of a cold, we stay on the ground.

My WAG estimation: 80-20, we go.

We'll find out in about an hour or two...

Round 3: Pre-Fontan

Call this a blog resurrection.

We haven't used this news outlet since we had a last-minute, untimely cancellation of the Fontan last summer. If you've forgotten (or never knew), we were within 5 minutes of out the door for Sam's Fontan pre-op last July when TCH called us and told us to stay home: our surgeon had been injured in a bicycle accident, and we had to wait.

Since then, Sam has had a relatively "normal" year, only spending two days in hospital--one for a dental procedure, one for a sedated echo and MRI. Here's a picture of Sam with Henry in a rare moment of mutual sweetness (don't mind the lack of pants--that's baseline for Sam):

It was this second procedure, the MRI, that has landed us in the "Cath Lab" three days prior to the rescheduled Fontan.  The fear of waiting a full year to complete the big surgery was that Sam might develop "collaterals," which he has,indeed, developed and had confirmed by MRI. If you checked out the previous weblink, Sam specifically has "Systemic Arterial Collaterals" which would be likely to complicate the outcome of his Fontan.

So...we will "coil" at least some of the collaterals, which means they will no longer shunt blood flow in unwanted directions. Our hope is that by doing so Sam will have fewer complications after the Fontan.  In the meantime, he's still in the Cath Lab and should be out in a little while.

As a number of people have been asking, we will, again, be using this site to communicate Sam's progress over the coming months.  In addition, if you "Like" Sam's Heart Journey on facebook: you can get shorter, more frequent updates than this site will offer.  We'll keep you updated at least one more time before game day on Thursday. Be sure, those of you who got them, to wear your Sam's Heart T-shirts on Thursday!

And, as always, thank you for all of your thoughts and support!

The Leclaires

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!