Good News, Bad News

Gabe had his two month heart check this week.

I try not to, but you know what?

I hate Appointment Day.

I don't hate anything about it in particular.  In fact, I love our cardiologist and the entire staff.  

I love that they let Gabe push all the buttons and allow him ample time to listen to their hearts with the stethoscope.  I love that they all love Josie and remember her dolls names.  Heck, I even love that they have chemical laden animal crackers for little boys that simply refuse to lay still during the ECHO.

chilling out after his ECHO with some Dora and animal crackers.

Gabe's cardiologist never rushes me.  

Which is a big deal since the spoken word is really not my strong suit.  She hides her smirks as I try to play out the next five years of Gabe's life and stick it all into one question.  She reminds me, repeatedly, that Gabe is doing better then OK.

What I hate is the gross reality of it all.

The reminder that we are watching, pulse-oxing, waiting for his heart to start dying.

In our day to day life, I know that his color is better then it's ever been.  His lips are, dare I say, almost rosy instead of the old pale blue.  His repeated requests to be carried are a sign of his working the system, not his body being incapable.

In my day to day world, Gabe has a special heart, but it's manageable.  We are managing it.  He is thriving and what we are doing is working.

These appointments serve as a reminder that it's temporary.

Eventually, his body will get too big and some sort of intervention will be needed.

I left Josie with a friend for this appointment so that I could talk to the doctor about surgeries and prognosis without scaring her.

I needed a refresher on what the game plan is for his heart.  Awhile back, the doctor told us he was going to need a heart transplant.  But over the past few months, there hasn't been any transplant talks.

He had a cold so I was expecting low oxygen stats but was pleasantly surprised when an 86 popped up on the pulse-ox.  That's the highest O2 levels he's ever had!

His blood pressure was around 92, which the doctor was happy with too.

He has grown half an inch and gained a whole pound since our last visit in August.

There were no negatives at all with his clinicals, but when we started talking about the next steps, the doctor said he still isn't a candidate for the Fontan Surgery.  This is the last stage of the procedure that was started days after he was born.  It isn't a cure, but it would help take some of the strain off of his heart and postpone a transplant.

With his heart still not pumping all the way, it is just to risky to put him on bypass to do the surgery.  Plus, with his current heart function, the Fontan isn't guaranteed to help.

So we are still looking at a heart transplant.  

She couldn't give me a timeline.  She told me that he could continue to thrive without any intervention until 7, 8, 9, or 10 but that eventually, he will need help.  Our goal is to keep him as healthy as possible for as long as possible.

I'm praying that in the next 5-10 years, medicine will offer us other options.  I know lots of kids live with heart transplants, but it is scary stuff.

I cried during the ECHO.

It is just so yucky and unfair.  I hate that I can't do a single thing to take this away.  Most days I am ready to face it head on and do whatever we need to for him, but this just wasn't one of those days.

So basically it was a great news, bad news appointment.

His day to day health is amazing, long term we still have a hard road ahead.

I'm glad that I have time to process it all.  Come to terms with the reality of it.

It's a strange feeling to have a child so outwardly healthy with such a big problem inside.

Whatever comes, we will survive it.



Modest Mama said...

My son also has a heart condition and was not expected to survive long after birth. He will be nine in December.

We are also in the waiting game, except we have a much longer plan. They hope to get him into middle age without any intervention, but puberty will be tricky. We are hoping his heart can "keep up" during his body's growth and changes.

I don't talk about this with many folks, family included, because it always becomes so doom and gloom. Thanks for sharing your story to remind me that I am not alone and also offering me a place to positively voice my story. Your little love will be in our prayers.

Ashley O'Brien said...

Praying so fiercely for Gabe.

Cristi said...

I agree -- "It is just so yucky and unfair. I hate that I can't do a single thing to take this away." I thought similar thoughts so many times today.

I'm so glad you have a great cardiologist taking care of your precious son.