It’s day 17 of CHD Awareness Month. Let’s talk about a cure.
While there are treatments for most CHDs there is no cure, it’s a lifelong disease. Open heart surgery is called a repair not a fix. Nolan is a lifelong heart warrior.
Lifelong. That’s a really long time. Right now Nolan will have no physical restrictions in his life, but he is also on lifelong heart failure medication for low heart function.
Every 3-6 months he will see a cardiologist. FOR. LIFE. And each time we will brace ourselves and pray with all we can that his heart function has remained stable (or increased) and has not decreased.
It’s scary, and the moment we wait for the doctor to read the echocardiogram is filled with fear, sweats, prayers, anxiety, stillness, and tunnel vision. Even typing this I am feeling ALL THE FEELS as I have PTSD flashbacks of waiting for the news.
When the news is not good, you leave broken. And when it is good, you question it before you can celebrate it.
Our cardiologist told us, never lose hope. And we won’t. But we will brace ourselves and pray for the best case. It’s like climbing to the top of the roller coaster.
In the months between, you get to ride the ride. The stress seems to feel more distant, and just as you start to settle in and enjoy it to it’s fullest, it’s over, and you have to start the climb again.
Next Thursday we go for Nolan’s 4 month follow-up. We will brace and pray. We are forever changed.