Friday, April 29, 2011

The Unexpected

"Expect the Unexpected" - I think that (a la Big Brother) is the new motto for all heart families I've come to know and love over the past year.

Another trip to Philadelphia this summer, let alone, this year, was certainly NOT expected.

Zoe's cardiologist in Philadelphia reviewed her latest echo and compared it to her previous echo and catheterization. She concurs that Zoe's heart function is low normal and believes that both PAs (the left pulmonary artery and right pulmonary artery) may be narrowed. To what degree is hard to tell with just an echo. She does not believe her aortic arch has changed since her last cath, and hence, nothing to be done at this point regarding her arch.

The game plan is this: schedule an MRI and catheterization in Philadelphia. Our best case scenario is that the MRI shows little to no change and/or no immediate intervention needed. If the measurements are good we will cancel the cath; if the measurements are worrisome, Zoe will undergo a cath with the intent of ballooning open her pulmonary artery/arteries. The cath attending will be in contact with Zoe's surgeon during the cath and they will devise a plan. If Dr. Spray believes the PAs are in decent shape, he will make the call to not proceed with intervention, as he can make any corrections during her next open heart surgery. If he is uncomfortable with the measurements taken during the cath, the cath attending will balloon open the PAs in hopes that they will hold. If not, a stent will be placed in one, or both, pulmonary arteries.

The MRI and cath will be scheduled back-to-back so that Zoe will undergo anesthesia only once.

We are awaiting a call from scheduling at CHOP. Zoe's cardio submitted the paperwork for testing in a "month or so."

The realization that we will be returning to Philadelphia has not yet set in. The realization that my baby needs additional, unexpected treatment is more than unnerving. Like always, we will take it day by day.

For now, we wait for a date to mark on the calendar.

I spoke to Zoe last night and told her we were going on a trip - a trip to visit her birthplace. I hope she grows to love Philadelphia as much as Caleb and I have. I pray that the feeling of HOPE overrides the fear we feel each time we return.

They say a positive attitude is muy importante in times like these. Zoe certainly keeps the positive train in gear!


  1. That is such a great picture from today! Everything will work out and I"m glad you're going to CHOP for everything!

  2. Expect the unexpected-I think that would pretty much sum of this recovery for Kyson. These kiddos like to throw curveballs at us don't they? Good luck...I will follow closely to see how things go when you head to Philidelphia.

  3. Love love love that pic of Zoes. You can do this Stace. Love you guys and praying you get this dang thing scheduled and OVERWITH soon!

  4. The unexpected is sadly a common reality in this heart world. I am so sorry for this little curveball. But how great that you have so many doctors looking out for little Zoe. I get butterflies in my stomach even thinking about Philly. I have such bitter sweet emotions when I think of it. Your little Zoe will be in the BEST hands though. We will keep praying for all of you.

  5. I agree with the above comments...the unexpected becomes the expected in our situation. I know that you are amazingly strong and can endure this next hurdle! Many prayers being sent your way for Zoe's upcoming MRI/Cath!