The Good & The Bad

Gabe had a congenital heart disease called Hyperplastic Left Heart Syndrome.

You can read more about it here.

It's been an emotional day for me and since even minor emotions wear me out, I'm feeling totally spent.

Gabe had his 3 month heart check yesterday.

After a string of excellent appointments with each one having better heart function than the one before, I was feeling confident.  The office was empty.  A major plus considering even one patient before us can result in a good hour wait.

But I could tell from the start that something was off.

His O2 stats weren't reaching 80 (he had an 86 back in January and that was with a nasty cold).  The nurse kept redoing his EKG.  The doctor didn't want to discuss his heart until after the ECHO.

I sent a panic text to Amber, "something's off."

Gabe is old enough now to hate the ECHO.  Animal crackers and lollipops aren't enough to keep the tears from falling.  He kept telling me he didn't like the gel or the wand or the lady taking the images.  He wiggled and cried and I prayed the lady would hurry.

When it was finally over, the doctor came in to see the images.

After looking she told me that his heart looks great.  The leakage that has been there since he was 18 months is totally gone.  His heart is squeezing harder than it ever has, resulting in some pretty great heart function.

Just as all my concern was melting away, I heard the, "but..."

And as it is with most good reports, there was a major negative.

The EKG showed that Gabe has developed a Juntional Rhythm.  

From what I understand after some minor research, the top ventricle is supposed to fire an electrical impulse, than the bottom does, than the whole thing resets and starts again.  Gabe's top ventricle isn't controlling the rhythm.  Instead, his atrioventricular node has taken over as his heart's pace maker.  This can work, but it isn't the correct path. 

She told me that it's common in people that have had multiple heart surgeries but rare in a three year old.  She's guessing that he has some scar tissue preventing the reset from happening.

Her concern is mostly that his heart rate could drop too low while he's sleeping.  So far, he hasn't shown any signs of this being a reality for him, but the goal is to catch it before it is an issue.

I listened intently while the doctor went over everything from the risks to the side effects to how we would monitor it.  I heard most of it, but honestly was trying to hold it together, my eyes filled to the brim, threatening to release a waterfall I was sure I wouldn't be able to stop once it started.

I don't like thinking of Gabe as being sick.  

This was the first time I've been confronted with what's coming.  I guess you can never be prepared to hear your baby isn't doing great.  I want to be strong.  Confident that all will be well, either way.  Crying felt like admitting it may not be.

I let myself cry and have a minor freak out for 5 minutes when we got to the car.  Than we got milkshakes and decided that we can face anything that comes our way.

He is wearing a Holter Monitor for 24 hours to record his heart activity.  A plus to this is that we will also get to see how his heart is responding to exercise as well.  The down side is, well, trying to keep a monitor with 1800 wires coming out of it and a big blue button on him for 24 hours.

If the results are a low heart rate, we are looking at him needing a pace maker.  If this were to happen, they would go ahead and do the Fontan surgery at the same time since they'd already have him open.  This wouldn't be ideal since his body is still so small.  They would like him to be quite a bit bigger before we go back in, but if he needs it, he needs it.

As of right now, we aren't going there.

Chances are just as likely that this can be fixed with medication.  It will be a week before we get the results and I know better than to drive myself crazy going over the what if's and how come's.

I'm tired and a little scared, but more than either of those, I'm hopeful.  Hopeful that his little heart is bigger than the hurdles he will have to cross.  Hopeful that his best days are ahead of him.

This next week is sure to be long while we wait for the results from the monitor.  We will do our best to stay busy and stay positive and remember that the God that brought him through two open heart surgeries and made him a Pope is still in control.

Gabe has a lot of living left to do.