Zeke's Heart

"There is no fear in love. But perfect love drives out fear."

1 John 4:18

A year ago we were told that Zeke's pulmonary valve had become "essentially non-functional."

The Cardiologist said that Zeke would write his own story of what happened next. He was amazed at how well Zeke's heart was handling the stress of the non-functioning valve.

We were told, "Only time will tell if or when he will need intervention."

The hope was that he may never need intervention.

In May, Zeke had a what everyone's best guess was a hypoxic seizure while swimming at the pool.

He was fully checked out by the Cardiologist and seemed stable but a Cardiac MRI was scheduled.

 Zeke and I went to Portland for that MRI on Wednesday....

Sweet boy did such a good job listening to the medical staff and getting ready for his sedation...

Even though he looked back with a quivery lip, he walked hand in hand with the nurse to the MRI room.

She said she set him up on the big table and he said, "I'm a little bit scared..."

So they had his ladybug breath the sleepy medicine first.

I was not so brave and stood there in tears long after he was in that room...

During the MRI they said that they would be stopping his breath multiple times to get the images that they needed.

From the waiting room I could hear the MRI machine stopping and starting and time felt like it stood still.

At the end, the attending Cardiologist came out, when I asked how his heart looked she said, "Well, the right side is pretty enlarged. I am guessing that your Cardiologist will want to do surgery sooner than later." 

Yesterday we got a call from the hospital scheduler saying that the Cardiologist would like to schedule Zeke for a heart catheterization with the hopes of placing a Melody valve via catheter.

The crazy thing is that when the call came in, I was sitting in a cafe reading a devotional about the "In-Between"

I literally didn't have anywhere to write down the details for surgery, so now they are written in the edges of the book.

"So I stand, looking at the ground, smelling the faint fragrance of God. Never once did it occur to me that when I found God's trail again, it would ruin my life forever - for once you feel the breath of God on your skin, you can never turn back, you can never settle for what was, you can only move on recklessly, with abandon, your heart filled with fear, your ears ringing with the constant whisper, "Fear Not."

Mike Yaconelli

The verse I had just read...

"Be still and know that I am God" 

Psalm 46:10

So...October 30th Zeke will be having heart surgery.

Yes, Georgia will still be recovering but that is as far as we can push his heart.

It is super scary.

I have cried buckets of tears....

both out of fear and gratitude.

You see,

he is one in a million.

He is the 'Perfect' candidate for the Melody valve.

Most patients with TOF need to have a pulmonary valve placed via open heart surgery first before their next surgery can be via catheter.

Literally, this doesn't happen.

The only other child that I have come across that was able to have a Melody Valve placed without an open heart surgery first...

is our Georgia Mei.

So I sit in their shared bedroom,

and pray over them,

watch the rise and fall of their chests,

soak up their sweet snores,

try to memorize the curve of their innocent cheeks,

the way their hands curl in rest.

I don't want to walk this road.

I am full of fear,

of 'what if's',

and yet somehow in it all,

the promise is that Perfect Love casts out fear...

drives out fear.

So I lay my heart and my fear in surrender,

before the One,

Who is Perfect Love.