Fontan Rockstar

Andrew has definitely been a rockstar through this whole Fontan process.  He has very rarely complained, asks us before he eats anything (“Is this too much fat for me?”), doesn’t fuss too much about a finger poke for an INR test and takes a ton of meds like a champ (none of them are flavored).  We are so proud of him!

He continued his wonderful Fontan recovery today with a visit to our favorite cardiologist.  Andrew is such a big boy at these appointments.  He stands on the scale (still weighs 12kg/26lbs, same as 2 weeks ago), sits still for his blood pressure, EKG and sats.  The only fussing came with removing the EKG stickers (his chest is still pretty sensitive) and when they poked his finger for an INR check (coumadin level).  He is a solid 90% on his sats, EKG looked fine and the INR was 3.3 (range is 2-3).

His blood pressures were overall good.  Andrew has some funky issues that cause some pretty funny readings.  They like to check blood pressures in each of his extremities (both arms and both legs).  Andrew’s legs differed by about 30 on his systolic numbers (top numbers) from each other.  The left leg has a normal blood pressure while the right leg has a low blood pressure due to a cut down that was performed on his right groin when he was a baby.  Obviously there is a different blood flow to that leg.  Nothing to worry about, just something to remember.  His arms are similar… the left arm is about 10-15 higher than his right.  We are pretty sure that this is due to a narrowing in the innominant artery (from when he had a BT shunt) that goes from his aorta to his right arm, therefore lowering his blood pressure in that arm.  Again, nothing to be super worried about, just keep an eye on.

The best news is that his chest x-ray is clear!  No pleural effusions and no chyllothorax.  This means that Andrew can come off of the low fat diet.  He is so excited to eat fried mozzarella sticks (from Sonic), chicken nuggets (from McDonalds) and real bacon.  He was putting in his requests on the ride home.  He also can go back to school.  So tomorrow we will call and make the arrangements for him to go back on Monday.  He will only have missed the first four days.

We did come home with a new piece of equipment… a Holter Monitor.  This is like a portable EKG.  It records Andrew’s heart beat and rhythms for 24 hours.  There are 5 little stickers…

 

He also got this really cool shirt to keep the stickers in place…

 

 

 

 

 

 

 

 

 

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