Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Friday, March 20, 2015

Echos in the dark.

Now, today's news:

Unfortunately, all has not gone to plan. Two weeks ago, Elizabeth's initial echo showed that she had 'low normal' function, which was a concern. Had it not been for Charlie's condition and our genetics, Sick Kids never would have even looked at Elizabeth, and her low normal function would have remained her secret until it either resolved itself or she went down the path Charlie took. Our cardiologist asked us to come back for a follow-up in two weeks, which took place today.

Two weeks ago, as I said in my previous post, I was not at all prepared for Elizabeth to have a less-than-perfect heart. She was acting so much better than Charlie did at first - like a normal baby! - so when Dr. D. said her echo wasn't normal, I fell apart. 12 hours of crying ensued...and then I got my shit together and got on with life. I started assuming that yes, Elizabeth has DCM and our second child lost the genetic lottery as well, but that in two weeks we would see what the follow-up held. Worse case scenario, she is on medication like Charlie was only she never has to get as sick as Charlie to get a diagnosis and medication. I will not be caught unprepared like that again. I'd rather think of the worst and hope for the best, with no actual expectation of the better of the two options coming true. Turns out, it was good to abandon hope of a discharge from Sick Kids (but not abandon hope of Elizabeth's story turning out well, as I not only hope but insist be true).

At the follow-up today, her heart function was exactly the same as it was two weeks ago. 50%-ish (58% is in the 'normal' zone). Our nurse practitioner has put Elizabeth on a medication (one of the two Charlie was on from diagnosis onwards) with the thought that being proactive is better than having her heart decrease function and have to fight to get it back. This medication should stabilize her and help her heart - which looks completely normal as there is no dilation, unlike Charlie's heart from his x-ray at admission - gain some function over the coming few months. She'll have another echo in 3 months and some decisions will be made from there.

Charlie's heart upon admission. Elizabeth's heart LOOKS normal; Charlie's clearly did not.

We are feeling OK about this news. While it was not what we were hoping for, Sick Kids is on top of the situation, they are being proactive and there is no reason to suspect Elizabeth won't respond the same way Charlie did, in a completely positive way. That said, there is now the worry of heart transplant if she doesn't respond to the medication among other worries about her mental health as she grows older and the possibility of the medication becoming less effective over time. It will take some time to sink in and Matt and I are always waiting for the other shoe to drop - to have her energy decrease, to have her suddenly start eating less, to see her colour go from pink to white to grey, as Charlie's did. Heart Warrior parents often suffer from PTSD (I'm not kidding, unfortunately) so anything Elizabeth does that reminds us of Charlie's pre-diagnosis behaviour sends us into a tailspin. For now, though, our beautiful baby girl is sleeping after eating more than any 3-week-old should be able to, happy and pink and healthy and followed.

I'll update again after the genetics come in, which is the next interesting step. They are expected the second week of April. Thanks for reading. xo

Our princess (I'm aware this picture is ridiculous, but I still love it!)

Charlie on left, Elizabeth on right. Siblings much?

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