Friday, April 12, 2013

Fontan Time

Today, nearly 3 years to the day we flew to Philadelphia with Zoe in my belly, we had an important cardiology appointment - a decision would be made whether or not to schedule Zoe's final open heart surgery ("the Fontan") or wait another year.

Before we left the house this morning, Zoe said to me, "We're going to see Dr. Stock, then we're going to see Dr. Spray."   No joke, the girl really knows her heart...

With some recent symptoms - purple lips and lowered oxygen saturations, my gut was telling me what my mind has denied for a few months now. Sure enough, Zoe's Fontan will occur this summer.

The details of the appointment for those who want the nitty-gritty: Her echo showed great function, zero tricuspid or pulmonary regurgitation, arch looks good and left pulmonary artery still smaller than the right.   Overall, she looks great and sounds great!

Thanks Daniel Tiger!

Her vitals: Good BP, normal EKG but oxygen sats were low (79-80), even lower than my most recent check at home... So, since her sats are low and coloring fading, Dr. Stock recommends we move forward now while she's strong and well, rather than risk heading into winter (cold/flu season) with low sats.

While Dr. Stock listened to Zoe's heart with a stethescope, she looked up at him, right in his eyes and said, "I want to be a doctor.  I want to fix my own heart."  I wish I'd been recording it.  It was the sweetest thing ever. 

Super cooperative Zoe!
CHOP received the "all systems go" signal and Fontan scheduling paperwork will be filed soon.

Zoe's added bonus:  she got a "purse" today - a holter monitor to record her heart rhythm for 24 hours. I'd noticed some slowing and rapid heartbeats and we felt it wise to monitor her heart rhythm for 24 hours. Quite a few kids/adults with single ventricle anatomy have pacemakers, but I'm hoping its either a fluke (related to illness) or nothing significant requiring a pacemaker.

None too pleased that her "purse" is "not pink!"

So, this is where we stand... mentally and emotionally preparing for Zoe's third open heart surgery.  And for fun, we're planning an early summer trip to Disneyland for Zoe's third and Emmy's fifth birthdays.  We've certainly come along way from packing up and relocating to Philly 3 years ago! 

We have several heart friends gearing up for their Fontans this summer, so please send good thoughts and prayers to Zoe and her friends as many of us enter an emotional and trying summer.

Thanks, as always, for your love and support.