Getting to the heart of the matter

2012-01-11 12:38:39 by Sarah Plant, Patient Family, as posted on the inside.akronchildrens.org blog.

We’ve reached the point where, for us at least, everything revolves around Rebekah’s heart. If she isn’t eating, if she isn’t awake as much, if she isn’t gaining weight, if she’s fussy, if she just doesn’t seem right — is it heart related? Everything relates back to her heart for us, even if it doesn’t always actually relate back to her heart in the medical world.

When something is wrong, the first thing we think of is her heart. We never imagined that one tiny broken heart would have the power to break two big hearts over and over again.

Bekah’s inability to eat two days ago brought about more tests, a visit from a cardiologist, and another echocardiogram.  The blood work came back fine. A cardiologist came to see her. He thought her murmur sounded louder, which he explained was good. It could mean the hole was closing a little on its own and delaying surgery and waiting could be an option.

He came back yesterday. The echocardiogram hadn’t shown a change. It showed that the pressure on the right side of Bekah’s heart is still high, and therefore so is the pressure of the blood going to her lungs. It’s a delicate balance of pulmonary hypertension and flooded lungs. Even as I was hearing the cardiologist explain what he had seen on the echo, I knew what he was going to say in the end.

Surgery may be sooner rather than later after all.

Read more of Sarah and Rebekah's story through her blog, Following Your Heart.

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