Nervous Nellies! That's what we are!

As you know we took Mya to Kosair on Friday, August 27th, to have an Echo and an EEG. The results of the EEG were normal, but when I spoke with the doctor about the Echo, he said it shows that Mya has a hole in her heart. The doctor assured us this was not a life threatening thing, and it's quite common (not that it makes us feel good about the news!). We will see a Pediatric Cardiologist on September 27th so they can review the results, and I'm sure do further testing on her heart, and see where we go from there.

The Pediatrician also stressed, over and over, that the hole in her heart has nothing to do with the "seizure" episodes Mya has been having.

This is what we were dealing with the past few weeks. Not getting overly excited, knowing it was easily fixable.

Well, yesterday I "accidentally" found out more about Mya's test results. On Saturday I received the paperwork to fill out for the Cardio doctor. On the paperwork, it asked that I call to confirm, and it also stated that I needed to bring in all the test results from Mya's previous tests. Well, when I called to confirm, and also to make sure the Pediatrician had sent all the test results, the lady started going through paperwork and reading off which test results she had, and what each one showed. She got to either the EKG, or the Echo (I can’t remember which), and said, "here are these results with a diagnosis of Long QT Syndrome". I said, excuse me, and then proceeded to question the diagnosis of Long QT. Yes, the test showed she has Long QT Syndrome. No one had told us any of the results show Long QT. I can only assume, since the Pediatrician stressed over and over that her syncope and seizures had nothing to do with the hole in her heart, that they preferred to let the Cardio doctor give us Long QT results and explain things face to face, rather than the nurse trying to explain on the phone. At least I hope that’s the case, otherwise, we’re going to start questioning whether or not we’re with the right Pediatrician.

I'm attaching, below, a link that explains a little about Long QT Syndrome. To be honest, this scares me more than the hole in her heart. Everything I’ve read seems to lead to the severity of possible cardiac arrest. However, after reading the article below, it does answer a lot of questions as why things were happening to Mya the way they did. On the flip side, now that we think back, knowing she’s had the “fainting spells” since she was a year old, she could have gone into cardiac arrest at any point in her life and we wouldn’t have known why until it was too late. What’s even more scary is that she started out with only the fainting spells, and those graduated into fainting spells with seizures to follow. Now we're even more anxious to see the Cardio doctor on Monday.

http://www.bing.com/health/article/mayo-126133/Long-QT-syndrome?q=long+qt+syndrome&qpvt=long+qt

More to come next week after we see the Cardiologist!

TTFN!