by Today was exhausting. AJ had appointments in Coralville and Iowa City – five of them to be more precise. We arrived at the first stop at 9 AM and didn’t leave the hospital until 5. We didn’t even get a break for lunch, things were so crazy.
Now don’t get me wrong. I absolutely LOVE when appointments can all be booked on the same day. Our continuity of care coordinator is amazing at making that happen for us.
But it does make for some seriously long days.
Everything went exactly as I had expected, which is crazy, because when we meet with cardiology, you just never know what kind of insanity might be coming your way.
AJ’s echo looked stable. That word is honestly my favorite word to hear from Dr. Reinking ever.
Stable means, no need to panic.
Stable means I can rest easy for a few nights knowing that AJs heart is performing as expected.
Don’t get me wrong. He’s still technically in heart failure, and always will be. That’s the nature of how he was made. But it’s not getting worse. Stable is a very big deal.
I didn’t realize it at the time, but four years ago today was very, very different. And I need to take a moment to recognize that, and you all get to come along for that ride.
Four years ago today, I took this picture of AJ. I spent the following hours worrying that it would be the last picture I ever took of him.
Four years ago today I literally saw my sons heart beating through a plastic piece of film that covered his still open chest, and it was the most beautiful thing I had ever seen. Because it was still beating.
Four years ago today, AJ had his Norwood, his first open heart surgery.
Sometimes I look back on these days and am so incredibly sad for what he had to go though.
Most days though, I look back on these days and see how amazingly strong he was, and continues to be.
He has come so incredibly far.
Today, we started the framework for starting to take AJ off of one of his pulmonary hypertension meds. That may not sound like much, but for AJ it’s a huge deal.
Right now, AJ is still considered ineligible for a Fontan. His pulmonary hypertension is a big risk factor for that procedure. The meds he take have definitely helped with the pressure in his lungs/circulatory system, but we ultimately need to know if they’re masking the symptoms, or if he is truly doing well enough to maintain without them.
If he can do well without this first med (bosentan/tracleer), then we can look at his next med (sildenafil/revatio). If that goes well, we start to look at whether we can come down on (or eventually even get off of) the oxygen.
These steps coupled with his airway repair may lead us in the direction of being able to consider the Fontan again.
Right now, AJ has a Glenn. His normal oxygen saturation’s sit around 75-85%. He can live with the Glenn for quite some time, though he may struggle to keep his oxygenation up and start to turn blue and tire more easily.
With a Fontan, he would most likely sit in the 90s, and his lungs would take on doing some of the work that his heart is currently having to do.
There’s a lot more to it, but point being, IF his body is able to support it, the Fontan would be a more reasonable long term state than the Glenn.
That said – I’m so absolutely proud of how far he has come. His little body has worked hard to be here today.
AJ is currently “stable,” and that is absolutely reason to celebrate.
