An echo revealing a seemingly narrowed descending aortic arch, small left pulmonary artery and low-normal heart function; What Would Stock Do?
Order an MRI.
That is the long and short of today's cardiology appointment. No, not at all what Mom and Dad wanted (or frankly, expected) to hear. We left deflated. Clinically, Zoe looks great - BP good, sats good, pulses good. Under the microscope, however, something may be up with her little heart.
We've known, since interstage, that Zoe's descending aorta may be narrowing. There were signs. There still are, but it's hard to see on echo just how narrow her aorta is. We've known that her LPA is narrowed and hence, the hemi-Fontan instead of the Glenn. What I don't like, nor does Dr. Stock, is the "red flag" of those two issues, coupled with low-normal heart function.
So, we'll undergo more testing to see what, if anything, needs to be done at this point. If nothing else, we'll have good baseline measurements to keep an eye on the aorta and LPA.
So, how are we feeling? Not great.
We knew, as soon as Dr. Stock walked into the consult room that we weren't going to hear what we'd hoped for. Instead of starting off by saying, "everything looks great!" which is routine, he began asking lots of questions:
"Is she tiring during the day?" "Turning blue with activity?" "Have you noticed any puffiness in her face?" "Any excessive sweating?" All questions which I know are not good to hear at this point in the journey. Thankfully, we were able to answer each question with "No." I knew the bad news was coming next...
We went over Zoe's echo and concerns about her arch, LPA and function. Zoe's heart med, Enalapril, instead of being discontinued (which I thought was a definite possibility) was increased. Dr. Stock will send Zoe's echo and his consult report to CHOP for their read. I, of course, have already emailed Zoe's cardiologist in Philly to inform her of today's events.
And so, we're deflated. I came to the harsh reality today that this roller coaster ride will never end. As soon as you think life is feeling somewhat normal, you're reminded that it is not. And will never be; regardless of how the journey ends.
As we drove away from downtown Phoenix, I told Caleb I was disappointed and felt like crying. He calmly responded, "I know, but we just gotta ride the wave."
And so, I'll ride this wave and hope to heck it's a good surf.
The MRI will likely be scheduled in the next month - we are not in an emergent situation, which is good; the waiting is hard.
Where will Zoe undergo her testing? That is a question that I cannot answer just yet. An MRI is standard for most, but not for cardiac kids. A specialized pediatric cardiac anesthesiologist is needed for Zoe and so we owe her a pause in making this decision.
A cardiac cath was also mentioned today, but the thought of a less invasive MRI makes some sense; particularly if no intervention (ballooning the LPA and/or aorta) is necessary.
So, that's it. In a nutshell. Not quite the news I imagined myself delivering to Zoe's fans today. Please continue to keep us, particularly Zoes, in your thoughts and prayers.
We'll keep you posted as our journey unfolds.
P.S. Thanks to my fellow heart moms for their "echo tips." Zoe fully cooperated during her echo - watching Dora on the portable DVD, licking a pina colada lollipop, being fanned by dad and kicking back using mom as a lounger!
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