Big Updates! – Sept. 17

Big updates.

First, Meg smiled for me today. It was so sweet. I was just talking to her and she gave me a beautiful smile. I asked if it was a smile and she blinked, then later I asked her to smile again and she did. My heart soared.

With everything my greatest fear was she was in so much pain and couldn’t be happy. She still has pain as they are balancing sedation and neurological response but that smile made my week. It’s been a tough week so that was huge.

We also got a likely diagnosis from the pediatric cardiologist – hypertrophic cardiomyopathy

Basically this is a congenital issue she was born with. Not covid, not the shot, born with it.

It means the muscle of her heart is not long, even strands like it is supposed to be but rather disorganized. This makes it more likely to get into non standard rhythms.

Some people live their whole lives and never know they have this. Some people have random, unexpected, and impossible to predict cardiac events like Megan did. It’s genetic and hopefully the genetic test will reveal the exact nature of it, but currently they only know maybe 50% of the possible gene mutations that cause this so it may not be found.

They want to do an echo on the siblings and maybe Susan and I. The idea is to see if we have any evidence of this in our hearts. If so we’ll be watched more closely and evaluated to see if they need to take any preventative measures.

As I said, lots of folks go their whole lives without issue even with this disorder.

The good news is they have a diagnosis and course of treatment as she comes off bypass and other life support treatment. Meg has a long road but I have to say that smile really felt like a bright and shining light.

Talitha cumi baby!