This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Saturday, February 18, 2012

Ly-Ly's Heart

I've written and re written this post several times over the last couple of weeks. It seems a little ridiculous to say that we've had a lot going on with our boy. Ever since his cold and ear infection a couple of weeks ago, he has become increasingly more symptomatic with activity. We started noticing these episodes right before our Cardiology appointment back in January. But since then, we've watched his heart rate be very irregular...up, down and all around. Additionally, he has seemed to have very little endurance and become increasingly short of breath, pale and cyanotic-(blue lips or duskyness around the mouth). Over the weekend, we took him to a near by bounce house for one of our good friends little boys birthday. We allowed him to bounce for just a minute or two and then Hollie took him down the slide. Apparently, that was more than he could handle even with oxygen. He was extremely short of breath, he was super pale, his lips were almost purple and he started gagging and vomitted. Events like this have started happening several times a day. I called the Cardiology nurse and we saw the doctor Wednesday morning. He told us his Holter Monitor results showed that he is chronically tachycardic or has a constant high heart rate. He gave us an order to start him on Propranolol which is a beta blocker. Our hope is that this new medicine will take some of the stress off of his heart so that he can enjoy a little bit more activity without having to pay for it! Finally we talked about his PFO or the hole in his heart. Because he has recently become so symptomatic, and has so many different things going on, we decided the best thing was to schedule the procedure to potentially close his PFO. We've tenatively scheduled it for the first week of April but that may change because we are trying to coordinate this with ENT since they want to look at and reassess his airway again. So far, he's done good with the new medicine and hasn't experienced any side effects. Our hope is that the procedure along with the new meds will make a big difference with his everyday excercise intolerance and endurance level. Otherwise, we are faced with the possibility of this just being disease process. Obviously, this is NOT where we want to be. Our Cardio's advice was to "not get your hopes up" or "expect too much". We should know more about a definite date for his surgery after next week. For now, we are doing our best to remain optimistic.

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