Not the news I was expecting to hear

Skyler had an appointment with her cardiologist this afternoon. I was expecting that her echocardiogram was going to show a decrease in heart function and that we'd set a date to have her leads surgically replaced. Boy was I ever wrong.

Let me back up a bit. Sky was diagnosed with cardiomyopathy at 6 months of age. Her genetic testing came back negative and her heart biopsy showed white cell infiltration. Though it was not definite, it was suspected that a virus caused the myopathy (by attacking the heart muscle). Usually when this is the case the child recovers within a year. Sky did not. She started medication and had a biventricular pacemaker implanted. She did very well with this treatment.

When her lead abruptly stopped working in December her heart function decreased and she had surgery to replace the whole system. So why now after having the pacemaker off for a few weeks has her heart function remained normal? Well, because we have literally lowered the pacemaker voltage slowly in hopes of minimizing her other symptoms. We also stopped it and turned it back on a couple times. Basically, we weaned her off of it without even realizing it. This prevented a sudden "shock" to her heart and allowed it to maintain its normal function. We also lowered one of her meds to see if that would help with the dizziness. It's odd, but we slowly weaned her from her treatment and never expected it to turn out this way. We thought for sure she'd have to have a new pacemaker right away. I was wrong.

So it is possible that it took Sky longer than normal to recover from viral cardiomyopathy and that she'll go on to live a normal healthy life. But I am not holding my breath. I am not getting my hopes up. Statistically the chances of this are small (That is my guess from all the reading I have done) and if it ends up being true I'd consider it a miracle.... and I am not a big believer in miraculous events.

What happens now? Her case will be presented at conference and a team of cardiologist and electrophysiologists will offer their opinions. I'll hear about that by next week, I hope. We go back next month for a repeat echo and if her function is down we'll definitely replace the leads and if it's still great..... Maybe then I'll get my hopes up a little.