Thursday, July 24, 2014

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 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!

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