The Diagnosis.

First of all you should know that I sat and cried over every comment and every verse yesterday.
For that
I thank you.
It was like water to my soul as I read scripture after scripture after prayer after encouragement from all of you.
The fact that our son,
an ocean away
is being absolutely bathed in prayer
is so
so
incredibly comforting.

Over the last two months we've had a few questions about what his diagnosis is exactly.
I have hesitated sharing mainly because we don't know everything
and moreover
I am not a cardiologist.
Nor do I play one on TV.
So my explanation would sound something like
Well. You see there is this doddlydoo called a heart.
And his thingybobber in his heart is missing and his whatchamacalit is not working correctly and
and...
and then you would have said I'm an idiot
and stop being my friend.

So you see.
You see why I haven't shared.

But it's a new day
and I thought it helpful for you to know exactly what we are praying for.
So forgive me if I butcher the medical jargon
or if I get something wrong
because trying to memorize every detail in a lengthy report
and especially remembering the deets from a rather startling phone call
is way beyond my pay grade.

With that in mind
giddy-up
here we go.

Joshua has Tetraolgy of Fallot with Pulmonary Atresia.
Tetralogy of Fallot in itself is an ugly enough beast to tackle
but you throw in the PA and things get a little interesting.
Add to that,
as the cardiac team said yesterday
his case is "the most severe."

As with anything
there are varying degrees of these issues
and he happens to {apparently} have the worst case scenario.
Pulmonary atresia (PA) with VSD is considered the extreme end of the anatomic spectrum of Tetralogy of Fallot.

Essentially Joshua is missing his pulmonary artery and pulmonary valve.
Some kids with this affliction have most of the artery and corresponding blood supply and wiring
Some kids have some of the artery and vessels
and some have none.
Joshua appears to have none.

When there is some remaining they can group all of those little vessels and such together and artificially form a functioning artery and make the blood in your heart go in the direction it needs to go.

But when the tiny little "collateral's" are everywhere with no real direction the arteries are called non-confluent.
That is bad.
Very, very bad.
According to the phone call of yesterday
this appears to be the case with him.

Essentially if you imagine a tree with a bunch of tiny branches. If they are all near one another and all producing good nutrients then you can theoretically group them together and form one large main branch.

If the tiny little branches are all over the tree, all only doing a little bit of the work then it is very difficult to grab them and group them together to work appropriately.
Technically speaking the goal is the "unifocalization of as many of the aortopulmonary collaterals as possible into a central pulmonary artery confluence."
Did you get that?
Yeah.
Me neither.


As with any adoption
we know and have some information
and we don't know and lack some information.

What we, and his soon to be cardiologist, do have is the Chinese doctors written report from his findings when they did Joshua's heart cath years ago.
What we don't have
are the actual films or images from it.

The written report indicates that he has the tiny branches that are everywhere
none of which are really effectively doing anything.
No valve, no large artery's where they should be.
Which would be why his o2 saturation is at 65% amongst other issues
and why China said no go. Nothing we can do. 

This is the place we find ourselves in.
If the written report is correct then they feel he will indeed not be a candidate for surgery.
If the written report is incorrect
then it's a whole new ball game.

Honestly?
My head has been in the sand.
I like my head in the sand.
It's quiet.
It's peaceful.
Kids don't die of heart defects.
It's a comfy place to be. 

Yesterday?
Yesterday fully yanked my head right up on outta there.
I hadn't really been giving much credence to the possiblity that things won't go the way we hoped them to go.
Optimist.
That's me.
And I was living in a place called De-Nile.

We've known from the beginning that it could go either way
but gracious that phone call,
actually hearing it
come out of the mouth of the #2 guy in the country that deals with these issues
was a big
giant
reality check.

There was no sugar coating it
there was no false hope given
it was real.
It was scary.
It.was.jarring.

It just took me a few hours
~stupid flesh~
to turn from what he said...
to what HE said.

"I am the Alpha and the Omega, the first and the last, the beginning and the end." Revelation 22:13

That puts us somewhere in the middle.

I read that today and thought
YES
that's exactly it.

So that is where we keep our eyes
our hope
our trust
our child
fully focused on HIM.

For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is Christ Jesus our Lord". Romans 8: 38-39.