10.28.2013

Heart Check, Gut Check

Gabe has a heart defect called Hypoplastic Left Heart Syndrome.  
You can read all of his heart post by clicking HERE.

It's been awhile since we've done an update on Gabe's heart.


It's been 5 and 1/2 months since his last cardiologist appointment and he's been doing awesome.

Not a day goes by that Andrew and I don't laugh about how this half hearted boy keeps us on our toes.  He loves playing football and swinging and riding his bike.  He works so hard at The Farmhouse, he puts me to shame.

Most day's the fact that he is missing half his heart goes completely unnoticed.

But over the past month, we've all started to notice some big changes in his breathing.  It went from hard breathing after running to hard breathing after taking off his shoes.  I'm about as far from a Nervous Nelly as you can get, but even I was starting to wonder if something big was brewing under the surface.


Other things have gotten hard too.

Like watching him want so bad to run and play with the other kids, but just not being able to do it.  We are walking a fine line between asking Josie to wait for him and not making her resent having a brother that can't keep up.  It's tricky.

A couple weeks ago we had to sit Josie down and really explain to her why it was cruel to try to get Gabe to chase her.  Such a normal brother sister thing, but totally different when your little brother could get seriously hurt trying to tag you.  I showed her pictures of hearts and of kids that had just had the surgeries that Gabe will have to have.  I did demonstrations of how fast his heart had to pump and made her run laps to see how he felt everyday.

She got it.  There's a new level of compassion when it's just the two of them.  She tells him about having surgery that will make him faster and is quick to find a sitting game when he needs a break.  When there are other kids around, he's still the odd man out.  It hurts my heart to see, but I know that this is just a part of life for him.

He was due for a check up at the end of November but after all the breathing changes, we decided to bump up the appointment.


We went in on Tuesday of last week.  The appointment went well.  His heart sounded great and was squeezing about how we expected it to.  His Oxygen levels hovered around 79.  He is just shy of 3 feet 2 inches and finally broke 31 pounds.  He had and EKG and and ECHO and wrapped it all up with a sucker.

So many moving parts to determine my son's future.  So many numbers to consider, machines to use.

At the end of the day, the doctor decided that while he is still doing very well, but due to a steady decrease in his stats, it is time to move forward with plans for surgery.

I've known this day was coming for three years now and, while the idea used to bring me to tears and make me nauseous, I feel ready.  Scared to death, but ready.  At least as ready as any mother can be to hand her baby over to have his breast bone cracked open and his tiny heart operated on.


Scratch all of that.  I'm not ready, but I understand that this is what needs to happen to give my son a shot at life.

Gabe is a strong, strong boy who has already overcome more odds then most adults will ever face.  I'm confident he will come through and be ready to take on the world.

In the next few weeks, we will take the first step in the Fontan process.

He will need to go in for a heart cathortization so that the surgeons can get a good reading of the pressures for each valve.  This will be an outpatient procedure like the last one he had when he was just shy of two.  After that, we have to wait about a week for the team of surgeons to review the results along with the ECHO he had done on Tuesday.  Based on that, they will decide if he is ready for the Fontan Surgery.

If he is, we will most likely go in to have it done at the start of the new year.

We will be in the hospital for 7-10 days, barring any complications.  The Fontan won't fix Gabe's heart permanently, he'll still only have half a heart, but it will separate the red and blue blood and ease up a little of the work load on his heart.  Basically, what they do is put in a tube that will bring blood from the lower part of his body directly to his lungs, bypassing the heart altogether.  This will save his heart from having to pump it to the lungs.  This will also help his muscles and organs get a higher dose of Oxygen.  The hope is that, after surgery, his O2 levels will go from the high 70's to the high 90's.

So that's where we sit.  

I covet your prayers as Andrew and I try to prepare both of the kids for this huge life event.  Both of them are at an age where they will be able to grasp what's happening and my goal is to inform them without scaring them.  I'm also already feeling the weight of all the small details that will have to be arranged to make this as smooth as possible.  This will test my ability to trust God like nothing else I've had to go through.

If you're interested in what his surgery will actually entail, here's a quick video.  It's pretty amazing what they can do.

7 comments:

Rebecca Stanley said...

Thanks for the update -- we're praying for y'all and for Gabe . . . I keep thinking about how hard it's going to be to have Caden go into surgery again, I'll be praying for your heart too!!!

Jenny said...

((Hugs))) deep breaths mama- you can do this! I know how scary it is- we went down this road for Aly's Fontan 2 and a half years ago. Sending thoughts and prayers to your family! <3

Stephanie said...

Sending warm thoughts your family's way. Your little guy reminds me so much of my little guy- and I can't imagine what a mess I would be if I was dealing with what you guys are. ((Hugs))

RGESPTA said...

Hi, Nicole! Thanks for your comment on my post about Chase's recent pre-Fontan heart cath. Seems we are in fact in the same boat... the waiting, the unknown timing, enjoying every moment. It's exhausting! :)

I haven't had a chance to read through your story with Gabe but I look forward to following along your journey as well!

((Heart hugs!))
mom2lo

mom2lo said...

Hi, Nicole! Thanks for your comment on my post about Chase's recent pre-Fontan heart cath. Seems we are in fact in the same boat... the waiting, the unknown timing, enjoying every moment. It's exhausting! :)

I haven't had a chance to read through your story with Gabe but I look forward to following along your journey as well!

((Heart hugs!))
mom2lo

mom2lo said...

Hi, Nicole! Thanks for your comment on my post about Chase's recent pre-Fontan heart cath. Seems we are in fact in the same boat... the waiting, the unknown timing, enjoying every moment. It's exhausting! :)

I haven't had a chance to read through your story with Gabe but I look forward to following along your journey as well!

((Heart hugs!))
mom2lo

Kaley McDanel said...

Hi I am a friend of the Nichols'. I had the chance to meet Gabe today at church. Kelsey told me about his heart condition and I wanted to say that my cousin has the same heart condition. She is now 21 years old and had lived off of her last heart transplant which was when she was very young. The doctor's told us that when she turns 15 she will have to be put on a heart transplant list. She is like I said now 21 and has not had to have a heart transplant. She is now being put on the list for a heart. Praying for your family I know it is a very long hard trial to go through.