Our Congenital Heart Warrior!

Our Congenital Heart Warrior!
Rockin her Red!

Wednesday, May 21, 2014

Another checkup "passed" with flying colors, how blessed we are!

I just logged onto here to post a very happy update of how Addy's cardiology checkup went today and realized I had not posted since October! Although time flies when you're having fun, our time has pretty much flown by just from being ridiculously busy! I took a temporary job teaching nursing at MTSU for the spring semester, but after this semester we decided that it took me away from my family too much and would not return in the fall. I realized within the last few weeks that Addy will be 4 in just a few months! This makes me want to fall to my knees with thankfulness that we have been given such a wonderful path with Addy so far. I am also humbled because we have been chosen to be Addy's parents and given this unique perspective as nurse practitioners that allows us to really understand and empathize with the patients and families we work with every day. While we never know how many days or years we will have with her, we try not to live in fear of the unknown and just cherish each day. That is not a hard thing to do with such an amazing child as Addy. She astounds us daily with her intellect, compassion, humor, and, resiliency (we aren't at all biased!)

It really is a different experience each time we have a cardiology visit. Today it was just Addy & I for our appointment. Heath was at work receiving text & picture play-by-plays of each part of the visit. Last year, at 2 1/2 years old, I can remember a meltdown over having to lay down for an EKG and making valiant efforts to try to get her to participate in walking saturations (run up and down hall x3 and then check oxygen saturation) that did NOT happen because she really just wanted mommy to carry her and was not going to participate in anything that included walking on her own two feet.

Today was a different story! She did everything that was asked, including the walking saturations (with mommy of course) and acted like an old pro! She knew every cue point of when to ask for stickers, snacks, and prizes....and even explained her special heart and white blood cells to Dr Kavenaugh! That being said, of course I had to document the whole visit with pictures! I'll give you the final reveal at the end of all these pics showing our very long day!

Selfie with mommy bc she was "a little nervous"!
"Mama Anne" always wants her own pictures too!
Rockin' her barely visible hero scar, or "zipper"!
Fascinated by "hey, there's my heart beat!"
Bored by this time...

Wired for sound with her 12 lead EKG

Every good girl needs goldfish & apple juice!
STILL waiting....but we know Dr. K is a very busy woman!
Counting all her sticker prizes!
And the results are...her heart looks wonderful! Her one single "pump" is doing all that it can and should! Her function is great, both pulmonary arteries growing as her body does, and no signs of clots or any narrowing, regurgitation, or any of those other things we hope to avoid! Her oxygen saturations were 94% at rest and 86% after 3 runs down the hall & back (good thing they didn't check mine!). Her EKG was perfect, and blood pressures were all equal. We couldn't be happier, so this means we can follow up in another year! 

The rest of the appointment when Dr.K finally made it back into the room was spent discussing everyday and long term management for Addy as a single ventricle. As of right now, the plan will still be to close her fenestration sometime around Kindergarden. She will stay on Coumadin and I will continue to give thanks to the CoaguChek Gods that we have a home INR machine to keep that in check! She will continue to be at risk of clots & microemboli both because of her history and physiology, but we will deal with that if and when it ever happens. As of right now, Vanderbilt isn't doing routine liver screening (liver biopsies every 5 years) for the long term hepatic complications, but we'll continue to watch some of the other institutes that are to see what those results are and if it's worthwhile as she grows. As a single ventricle, she is also at increased risk of arrhythmias, and many adult Fontan's do wind up with pacemakers, but as of right now her heart is moving in perfect lub-dub synchrony! Our one concern is still some intermittent cyanosis and shortness of breath, for which we'll be heading back to ENT for most likely some adenoidal tissue lasering to hopefully help that. Otherwise, we have nothing to complain about and are overall thrilled and the best news of all is that we get to just let her be a kid and pace herself (which is probably a bad idea!) in her activities.