Thursday, August 4, 2011

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
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 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
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?
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.

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 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.
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
reality check.

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

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
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.


  1. I want to share with you that I have a niece who has the exact diagnosis as your son. Or, I should say "had". Brynn Claire is now 18 years old, as of july 24 and she graduated from High School this year! Brynn was given the same prognosis at 6 weeks old. BUT! There is a doctor at Mayo Clinic who designed THE surgeries to fix Brynn's little heart! And, guess what? Brynn was born in a small town, just 60 miles from Mayo Clinic. She's had 4 surgeries to repair her heart and the docs believe that her last surgery (done at age 11) will be her last! There is a very small chance that she may need a valve replacement IF her body grows too much more, but the odds of that happening are very, very slim. She's a tiny young woman! She does have some issues with lung infections. So there is Hope for your sweet son! If you ever need any information, please email me and I'll get you connected with my sister, Brynn's Mom. ( Praying for your son and for Peace in your Mama heart! Love ~ Jo

  2. You, your family and your sweet little man have been in my prayers, non-stop! HE is in control. HE knows the plans.

    I believe there is ALWAYS hope. No one thought my daughter would walk....and not only does she walk but she runs, jumps and hops! Not as fast as other 7 year olds but she does it.

    And for what it's worth...Mayo Clinic IS amazing!

    Praying without ceasing!


  3. Oh Sonya...I didn't see your blog yesterday so I am just finding out about your little man. Don't give up hope. Until you get him home and have a cath done here, the doctors can't know for sure if he is operable or not. My 7 year old has the same heart defect (not sure about the severity of her pulmonary atresia). She is from China and had surgery when she was 18 months--so it's a different situation than Joshua. BUT...she is so healthy! If not for the scar on her chest, you would never know about her heart. And remember what I told you about the doctors in Boston... Just sayin' :) HUGS!!!!

  4. And in the middle is just where you want to be...we are praying, we are believing that His purposes are grander than we can comprehend...

  5. i was just thinking about it all and remembering how... God cares for the orphan. He is near to the broken hearted. He is compassionate. full of faithful love. He cares and loves with pure love, greater than our love even at it's best. He cares for joshua's body but oh how He cares for Joshua's soul! and this healing, it may be two fold. one part for his heart and the other for his salvation. so hang tight to that second healing but it's the greatest one of all. and there's no dr's report that can dampen your spirits on that one. God has a plan for this boy - for his heart and his soul. Hold close to Him and watch Him unfold it. You get to be a part of His heart at work. He will surely bless you and grow you through it!

    erika, whom you don't know but who is loving your stories! :)

  6. One thing I have held onto over the last few months is that Joshua, Joshua, and Elisyn are at an advanced age for their diagnosis. Are they waiting for us? I believe that God has a purpose. These precious kids are maintaining even considering their heart issues. Just thinking about hope.

  7. I don't know for sure what to say. I want to say that everything is going to be better than they say and I hope and pray for that. But I do know that God has a plan. Maybe it's for Joshua to be in a Christian household with a real family who loves him and can lead him to Christ in his short life. Maybe it's to be healed here and have a longer life but more importantly, to also learn to know Christ from his loving, crazy Christian family. "For I know the plans I have for you, declares the Lord, plans to prosper you, to give you hope and future." Jeremiah 29:11 - that picture you posted, where Joshua learned he had a family, that is his hope and future that he didn't have before. God provided it by using you and your family. Praise God.

  8. Just keep holding on to all those good words from the other posters. God is in control ...but scary stuff!

  9. Keep the faith and we'll keep praying!

  10. Sonia, I'm just now getting your last two posts digested! I wish I had wise words to lift your heavy heart. Praying with you. We are weak, too weak to deal with this "stuff" HE IS STRONG!
    praying and praying.

  11. Our God is completely capable of miracles- do not under estimate HIM!

    I too, would crumble with those words but He does not- pray pray pray! He hears you- he hears all of us and we join in prayer for your sweet boy!

    Your little boy is beautiful and only God knows the plan- stay strong in HIM!

    No one has the images... so lets just wait and see what the images really look like- ya just never know? Maybe there are options that haven't even been explored yet and BTW you did an awesome job explaining it to the rest of us!

    Hugs from one Momma to another!

  12. I will continue to pray and if all else fails I hope he can be a candidate for a heart or heart/lung transplant.


  13. Sonia, my prayer for Joshua will become more specific. So much love from KS!!!
    “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened." Matthew 7:7-8

  14. "Somewhere in the middle". You are one amazing lady, and I am so very sad that we only had you for a year. Obviously, the LORD wanted you to go through this just with Him, but we are all praying like crazy. Just a little note: The VSD (if it stands for Ventricular Septal Defect)is part of the TOF along with the enlarged heart wall, misplaced aorta and pulmonary valve obstruction (or lack thereof according to the Chinese report.) So I am a bit confused on that point. But no matter, God can take care of it all.
    Donna O.

  15. I'm so thankful that our God is not a God of "odds"... It is ALL- 100% in His loving hands... and He is fully able! He will finish what He's started.... What a joy to see Him move! On my knees with you for sweet Joshua! Lori

  16. Oh Sonia, just know that I am praying for your sweet boy!! "If the Lord brings you to it, the Lord will bring you through it." You are amazing as is that beautifully made little guy of yours! PRAYING in SC!!!!

  17. Still praying here in Utah. I will pray that the written report is incorrect and that Gods hands will heal your son... even if that means his hands are guiding the hands of a surgeon. Praying for peace for you. Thank You for sharing your strength. Amazingly it strengthens me to hear it!

  18. Sonia, I sit here in tears because I can so clearly see your strength in the Lord. He is giving you peace and you are receiving it! Praying that our Lord..the divine Physician, will heal your sweet boy (if He hasn't already ;) That He will continue to use your precious family mightily. {{HUGS}}

  19. Just finding out about your news. I am so sorry. I am PRAYING! I know you know all the truths that I could say. Yet there is no better place to be than totally trusting Him. So glad you have the chance to be the earthly picture of the Father to Joshua.

  20. I know nothing of heart issues, but the LORD does and NONE of this is a surprise to him. He knows exactly what the world's diagnosis of your precious son is. But don't forget -
    "For though we live in the world, we do not wage war as the world does. The weapons we fight with are not the weapons of the world." So take every thought, fear, question captive to Christ Jesus and speak healing truth over Joshua. I'll be praying that when he does come, there will have been a miracle in his little heart and he will be operable!!

  21. Now faith is being sure of what we hope for, and certain of what we do not see. Hebrews 11:1

    We prayed this continuously through our first adoption - it gave us great comfort. And God answered our prayer, even numbering our travel group 111.

    You are strong in faith and in His love - I will be praying for your journey to your newest son.

  22. I have tears. And am PRAYING for you and Joshua.
    But I can't hardly believe with a heart that bad he would still be here waiting for YOU, his MaMa, if there weren't a reason behind all of this.
    You are amazing. I know I've told you that before, but I think you are REALLY amazing!!!!
    And God? Well, we know what He can do don't we? : )
    Know that I think of you and pray for you every single day.
    Love you!!

  23. Oh, Sonia. I feel your pain. Listen, we didn't know any of that medical stuff either in the beginning. It certainly is a learning experience. Daniel had a very similar condition to Joshua, except he was 2, so the collateral system hadn't formed yet.

    God has clearly called you to Joshua. It it obvious that you already love him with all your heart. Whether he has a long life on this Earth or not--whatever God has in store for him--he will get to experience the love of a family. What a blessing.

    We feel so blessed that we were able to get Daniel home and have him baptized before he left us.

    I want to give you my email in case you ever need to ask me anything about Daniel or his condition:

    We are praying for you guys. Hang tough and praise the Lord:)