Congenital Heart Disease Awareness

Arthur was born with a few heart defects.

I mentioned it briefly in the beginning of this blog.

Thankfully it does not cause much day to day worry in our life,

but is always in the back of our minds.

Arthur was born with Transposition of the Great Vessels, 

an ASD and 2 VSDs

He had to have open heart surgery when he was 5 days old.

To say it was a hard time would be a major understatement

He was in the hospital for 5 weeks and endured many complications

The first year of his life was rough. But right before his first birthday all his cardiac

meds were stopped, he was good to go!!

This picture is from that exact day

( This is actually us)

He has seen his cardiologist once a year since then. Occasionally more for mild concerns, but

has not had any heart related surgery since he was a newborn.

He has some mild "pulmonary stenosis," which is from the surgery.

It's narrowing of the pulmonary artery where the stitching is from his original surgery.

They always told us that it would be around puberty that we may see

the pulmonary stenosis start to affect him.

That he may grow faster then his heart can keep up with.

Meaning the stenosis would get worse.

Which would mean he would require his 

2nd

open heart surgery

As he has reached puberty all has been ok.

He has grown fast and is already quite tall at 13.

But the past 3 weeks he has been

extremely tired.

At first I figured he was growing or maybe he had caught a mild flu.

But three weeks later it has not improved.

My 13yr old is going to bed at 830 by choice

AND

Taking naps! By choice!

These days we try to say maybe it's epilepsy. Maybe he is starting to seize

at night and it's effecting his sleep?

That has never been his M.O when it comes to his seizures.

Then there is that nagging voice in my head,

" Come on Mama.....you know it could be his heart."

He is at "that age." He is tired beyond reason.

It fits.

He was due to see his cardiologist anyway.

So I scheduled him an appointment.

All this makes my heart sink. We worry about so much with him.

To even think he may have to have

open heart surgery again....

It makes my eyes well up and my stomach turn

I would never survive if we lost him