Monday, June 30, 2014

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: