Cardiac Checkup – Nearly 3 Years Post-Op

May 10, 2017 at 8:00 AM Leave a comment

Once again, it’s been a long time since I’ve written on the blog. Life continues to throw us curveballs. As a result, finding the time and energy to keep up with the blog has been nearly impossible. Life is messy. And exhausting. So. Very. Exhausting. But here I am again to give it another go. Much has happened, but it seems the best place to start is with the here and now and try to work backward as time allows.

On Monday morning I took Millie in for her annual echocardiogram, EKG and cardiology checkup. She’s grown up so much in the last year! When I took her in for her last checkup she wasn’t talking yet. She was also pretty hysterical about everything the doctors, nurses and technicians did. There were so many tears! Getting a good echo, blood pressure and EKG took some serious time, bubbles and patience.

#SuperMillie looking fabulous while waiting for her annual echocardiogram and cardiology checkup. #chdwarrior #heterotaxy #preexistingcondition

This year was so different! She did an amazing job. She was totally calm during the echocardiogram and followed directions beautifully. Though she wasn’t a big fan of the ultrasound “slime” she was amazed at hearing her own heartbeat. Her eyes got so big and excited.

And, of course, she’s been talking for about six months now so we had actual conversations about what was going on throughout the appointment. It was so fun to listen to her talk and recognize different tools in the exam room, like the otoscope and stethoscope.

As far as the checkup itself, her heart is doing really well post-repair. Her echocardiogram looked great and the cardiologist reiterated once again what a beautiful job the cardiothoracic surgeon did on the repair of her total anomalous pulmonary venous return (TAPVR). Her blood pressure and heart function are all good.

She still does not have a normal sinus rhythm, which has been the case since her open heart surgery. But she’s handling it beautifully so there’s nothing to worry about right now. (That “right now” part always gives me pause.) Previously, it had been my understanding that the reason for this is because the location of her heart repair interrupted the normal conduction of her heart. But this time the cardiologist mentioned that this is a common problem for people with heterotaxy (also known as situs ambiguous, meaning the unusual arrangement of Millie’s internal organs). Whatever the cause, I’m trying my best not to worry about it.

Her doctor was thrilled to hear her talk and discover how well her paralyzed vocal chord had recovered. There’s no real evidence that it was ever a problem.

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Another cardiac checkup in the books. See you in 18 months!

All in all, Millie is doing amazingly well. We go back for our next cardiac checkup in 18 months, which is an excellent sign.

However, (there’s always a however with us) when I mentioned that Millie had been developing low-grade fevers fairly regularly that didn’t seem to have a cause, her cardiologist recommended we follow up with her pediatrician and have her evaluated for a possible blood disorder called cyclic neutropenia.

After talking to the cardiologist, our pediatrician immediately referred us to a hematologist. So… we’re about to add another specialist to Millie’s team of docs. More on this latest development after we have our appointment at the U of M on Thursday.

 

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Entry filed under: CHD, Life.

Looking Back: Two Years Post-Op

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