Gillette and the EKG

There are days when I feel as though life just knocks the wind from our sails. It's always surprising, sudden, catastrophic even. It shouldn't be though. I mean if life were all sunshine and lollipops well then we wouldn't have reason to grow, learn, and persevere through hard stuff to become better people. Yesterday, the sails were full. We spent the morning at Gillette Children's Hospital meeting Ellie's new team. I drove us home thinking how blessed we've been to always find our way to the right place at the right time. I feel (present tense intentional) confident that God is on our side, that as he has promised, he's gone ahead of us prepared the way and IS in control. I feel that still tonight, even after the wind is gone from the sails and the masts have toppled into the sea. 

Late this afternoon, Gillette called to give us the results of Ellie's EKG from yesterday. We've had EKG's to monitor the health of Ellie's heart before, at Mayo. Our last one was in the fall of 2012. I learned today that at that time her QT interval was borderline prolonged. (It pays to have experts in Rett examining these tests...nobody at Mayo told us it was borderline.) I also learned today that while in the fall of 2012 it was 442(borderline), yesterday it was 485(worse yet.) At 500 it is no longer considered borderline, then it's considered Prolonged QT. Our new pediatrician feels that considering rett and all it's nasty impacts on the body, that we don't have much choice other than to keep a close eye on this. I asked the nurse on the phone what kinds of symptoms we should be aware of with prolonged QT, thinking perhaps there would be warning signs that it's gotten worse, etc. Her response was "Well it can be fatal." I'm just guessing here, but maybe the silence on my end gave her the idea that she'd perhaps gone a little too bluntly on that response. She followed it up by telling me that heart palpitations and irregular heart beat are typically symptoms of prolonged QT. Really a bummer that Ellie can't really tell us if she were having any of these symptoms! :( We go back to Gillette in 6 months and we'll continue to monitor her QT. Our nurse said that if her QT were to be more than 500, they would likely look into medications that could help shorten it. 

It seems like just when I think perhaps we have a handle on life, we realize all over again that we really, really don't. Thanks for reading, praying and supporting us on this journey. 

~Blessings
Angie