Warning: Extremely Basic Explanation of why Gabe was on this medication:
When the heart pumps, it squeezes all the way and pushes all the blood out. Gabe's was only strong enough to squeeze a little bit and couldn't get all the blood out so it pumped double (more like triple) time to get enough blood out to keep his body going. This was a smart solution for his little body, but would end up wearing the heart muscle out very quickly as he grew, thus landing him on the transplant list.
He had been on this medication for a couple of years.
Some of you may remember that back in 2012, we were told Gabe wasn't a candidate for the Fontan surgery and would have to go on the transplant list for any chance of survival. Then the doctor decided to try this medication and, while we aren't sure if it was the medication or just his heart getting stronger, he became a candidate for the surgery and the rest is history.
Since the Fontan surgery, he's done awesome.
Like for real. You would never ever know he has half a heart if you didn't know. His new cardiologist is blown away every time we see him. Which is why we have been slowly weaning him off medications. Many of these pills may very well have been needed pre-surgery. But post-surgery, we want him on as little as possible. Many of these medications he will need in the future. So getting him off of them now if he doesn't need them will reduce the risk of him having a tolerance for them later when he actually does need them.
We've reduced 3 so far with no issues.
But this last one has felt different.
I got booted from the bedside seat. Big Sister was his hand holder of choice.
It's tricky because, for a HLHS kid, Gabe is a beast.
T-ball, biking, running, not needing any resting. He does more then he really should be able to. But to us, the ones who know him best and see him everyday, he's just off the past couple of weeks.
His teacher says he says he has a headache a lot and he needs to lay down quite a bit at school. We went on a normal bike ride last week and he struggled bad. He's grouchier than normal and super tired by the end of the day.
All of which could be explained by starting kindergarten, a Summer of not being very active outside, and a few strings of later than usual nights.
Or it could be his heart telling us he's headed for trouble.
So we headed in to the cardiologist yesterday to see what was going on in there.
Since it was a somewhat emergency, we weren't able to see his usual cardiologist. I was kind of glad because I wanted a second opinion in taking him off the meds.
The appointment went great.
His ECHO was showing strong heart function and all of his pressures are still awesome. The doctor thinks that what we are seeing is just what it looks like for an HLHS-er to be growing. He recommended just going with his lead and allowing rest when needed.
And like a real son of a gun, this past few days he has been back to his usual wonderfully active self. He even got an exceptional behavior certificate yesterday at school. His teacher said he was like a different kid. So here's to hoping he keeps this up!