5.22.2013

The Good & The Bad

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

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.



12 comments:

elizabeth said...

keep us posted, OK? The Lord is near and loves you all.

Piper AndTheKids said...

{{hugs}} I hope medications can keep everything stable so he can continue to wait and grow before his Fontan

Bethany B said...

My husband has Transpositioning of the Greater Vessel and had open heart surgery at 9 months old. In order to fix his weak heart they had to switch the sides of his heart to do the opposite function. He is 29 years old, with a "weak" heart. He is 6'4", is a PE teacher, extremely active and overall healthy. Today he is wearing his holter monitor too. We have something in common, don't you think? Gabe will be great, strong, and totally able to enjoy life to the fullest. I hope that my husband can be a reminder of that to you while you are worried. God's amazing, and knows the plan for your little man. Heart issues are so scary (trust me…I understand!). Prayers for peace and for all those nasty wires!

Brianna Bell said...

praying for you and your family today! :) thank you for keeping us posted. So many people care and want to pray for you! :)

John and Katie said...

Praying for Gabe!

Rebecca Stanley said...

Praying so hard friend!!!

Jamie {See Jamie blog} said...

Will be praying.
And, for the record, both of your kids have enough personality for a dozen kids. I could tell that in those photos, even if I'd never met them. He's a tough guy. (hugs)

Mo said...

Praying for you all. Thank you for sharing the sweet pics of Gabe.

kimmer said...

Gabriel Gordon is strong and God is leading the way. And holding his hand along on this path. And holding your hand too. I'll be praying and I love you so much!!! Be strong. Think positive!

Rachel said...

Nicole - I've been reading your blog for awhile now & while I have no children & therefore, really don't know what it's like to have a child who has a medical condition, I just want to let you know that I think you are an amazingly strong woman. It's really easy to see from your posts & pictures that your children adore you & while I'm sure they don't know it now, but I bet they will learn to appreciate how much you support & love them, no matter the situation.

Sorry if this seems weird to be coming from a random stranger, I just felt a strong urge to let you know that I respect & look up to your courage and parenting.

- Rachel

Coastalpines said...

Your little guy is always in my prayers.

Beth said...

Oh Nicole. I am so sorry I didn't read this earlier. We are praying for Gabe. For good results from the monitor, for comfort for you guys, for wisdom for the doctors. My heart aches I can't imagine the "what ifs" that must flood your mind at times! Your faith is so encouraging! Praying:)