Monday, March 5, 2012

Are You Freaking Kidding Me?

Meet Joey.

He's cute.
He's little.
He's my son.

Joey has repaired ASD, VSD & PDA.

Joey's a healthy,
though tiny
little guy.

He runs.
He jumps.
He plays.
His O2 sats are great.

This is Joey.

Joey saw a cardiologist in May of last year.
He'd been home nearly 4 months at that point
and just as a precaution to make sure his repair that he had done in China as an infant was fully successful we were sent to cardiology.

No prob.
I'm down with that.

So we go.
And wouldn't you know it,
it's perfect.
His patches look great,
his EKG looks great
Echo looks great


We are told to just have him followed every 1-2 years just to make sure everything still looks good but they see no problems and don't anticipate there ever being any.


So here we are.

We move.
And since it's been a year they refer us again to a cardiologist,
a new one now since the move.

We go.

And as I am driving the 35 minutes to the new cardiologist I begin to have a conversation in my head that goes a lil sumpin like dis:

"Wow, this drive is so much closer than Joshua's cardiac team. Hmmmmm.....I do love Joshua's cardiac team....but they are so far away.....maybe I should think about having his normal every few week outpatient care taken care of here but keep the surgical team far away for when he needs his next surgery. It's so much much more convenient. I have met this cardiologist already as he is the one that admitted Joshua a few weeks post op for his infection on his scar......yes.......I like this idea....I think I'm going to ask about this....."

And then we arrive a short 35 minutes later.

And we walk in
and they immediately take us back
EKG check.
Echo check.
and all the while I am thinking
"Oh yes. This will be great for Joshua too! SO much closer, it won't take all day to drive there and back. This is gonna be great!"

And then they put us in the exam room and say the doctor will be right in.

We are going to be done by lunch!

So we wait

and wait

and wait

and wait

and wait



And it is at about minute 35 that I open the door to casually remind people that
we are still here and have not yet been seen.

So we wait
and wait

and as the minutes tick by I start to get slightly irritated and the conversation in my head then moves to
"Well, no way I am switching! Joshua's cardiologist NEVER makes us wait this long! Sheesh! This is ridiculous"

At about minute 45 I decide to take Joey for a stroll in the wheely doctor chair up and down the hallway to
A: entertain him
and B: to remind people that yes....we are still here.

As I go down the hall I see the Dr. not even in an exam room
but in his office
sitting with another doctor looking at images.

Ugh I grumble in my head.
Can't they do that later?
It's not like he is behind with a patient in an exam room even.
He's hanging out with another doctor looking at echo images.

So Joey and I do another lap and the next time we come around there are now 4 doctors in his office
and one more on his way down the hallway.

My blood is about to boil.

So as I walk by he sees me this time and I raise my eyebrows and give a slight smile as if to say
Dude. Could you do that later and come see us now so we can go? It's been over an hour.

We stroll back to the room as I finally see the doctor emerge and begin down the hallway with another doctor at his side.
And as he begins to speak
I realized.....

It never once entered my mind that they were looking at Joey's images.

And my heart sank.

I don't really remember much of what those two doctors said.
I remember some of the questions like
"Does he have chest pain when he runs?"
"There was no mention of this from his previous cardiologist?"

And when the words "sedated MRI" and "PAPVR" and "possible surgery" starting flowing from his mouth 
my brain

I went on autopilot.

"Ok, MRI, sounds good. Thanks so much. We'll see you in a few weeks then." Or something to that effect came out of me.

And as we got into the car,
I turned around and handed Joey the lunchbox I had made for him
put on his Chinese songs CD
buckled my seat-belt

and it hit me.

Partial Anomalous Pulmonary Venous Return (PAPVR)

What the?
What did he just say?
Did he just say what I think he just said?

There were probably a couple of doctors sitting back there thinking to themselves, "Wow. She handled that really well."

Uhhhh no.
I just have a delayed response I think.

So that's where we are at.
It has something to do with how many pulmonary veins are feeding into something or other.

If my head hadn't been spinning I may have been able to clearly articulate to you what he said.
But it was.
So I can't.

He can apparently clearly see 3 veins on the echo but where the 4th is, is a mystery.
If there are two going into one place they can watch it and see how quickly the ventricle is swelling.
If there are three in one place
they operate.
They have to.
If they leave it as it is, his ventricle will fail.
It's kinda like a balloon.
There is only so much intake it can handle, only so far it can swell. 

They don't know why this is.
He did say he couldn't really believe what he was seeing on the echo which is why he called in the rest of the team to his office just to make sure he was seeing what he thought he was seeing.
People that have had a late ASD repair(like Joshua's age for example) or no ASD repair, can expect to have an enlarged ventricle because the blood was overflowing in there for so long.
But this isn't the case with Joey and his ASD patch looks great, no leakage.

So now we look at the pulmonary veins.

Here's where it gets sticky though.
Joey's echo from 10 months ago?
The right ventricle was normal. 
So if that is truly the case then something has gone awry with his heart over the last few months and now we have a problem.
a "significantly/severely enlarged" right ventricle problem.

He has somehow gone from normal, to far from normal in a relatively short amount of time.

As of today the tape of his echo from last year is on the way to his new cardiologist so he can compare last years to last weeks.
His MRI is scheduled for early April right now where he will undergo general anesthesia and we will get a clearer picture of what is up with his heart.

If it's two veins in one place then we watch it closely to see how quickly it is swelling.
If it's three
then I will be in the corner sucking my thumb
because walking through another open heart surgery with another one of my children so soon after the last?

I don't know if I can do that.


  1. WOW! We will be praying. What else do you need?

  2. Praying for answers for you all. Hang in there. God is in control and although this is suprising news to you, it is not to Him the great healer. One day at a time....


  3. Omg ): Praying so hard for you, joey, and your fam right now!! <3333 stay strong, God will be there every step of the way to guide you down the path.
    God Bless <3

  4. Oh goodness. I am so sorry that you had to hear this news! I will be praying.

  5. I am so sorry! Praying for you as you walk this road with that precious son!!

  6. Praying for peace and wisdom!

  7. WOW! That was a curve ball no one was expecting. I will begin praying for your family once again. I wish we were close enough to help out.

  8. My prayers are with you and Joey and the rest of your family!

  9. God will see you through this and He will be your strength. I am so sorry you are going through this! Please know you and Joey will be in my thoughts and prayers!

  10. Hugs, and more hugs. I know that part of it is the case where you think oh this ones doing great, I am focusing on so & so. This happened to us (although no where as scary as heart) went in for the new littles ortho appt and wham i get confronted with undiagnosis and rediagnosed with something else, legs different lengths etc with our bio son. I turned into a puddle when I got home. KNow you are in our prayers.

  11. So good to know the Father holds little Joey in the palm of His hand during this time:) Praying for you all.

  12. Praying......praying and praying some more!

  13. Praying, praying, praying! Hugs!

  14. We will be praying for you and your family!

  15. My prayers are with you and Joey and the rest of your family!

  16. Wow...I wasn't expecting that! I pray that the doctors will have the wisdom and skill to correct whatever needs to be done. I pray that you are given an extra measure of strength and ability to walk through whatever is necessary to Joey 100% well. I pray that your family as they prepare for another time of parental separation.

  17. Ok, my heart is breaking! I thought it odd this morning that you were brought to mind during my prayer time. Now I know why. I will surely be praying for this whole situation. I have no doubt that you (of all people) can do whatever it takes. FYI, this last summer my daughter was hospitalized for several days with a very low heartrate. One of the worries was that the patch (installed 22 1/2 years ago) had torn loose. I never knew that could happen. Thankfully, it was just a virus, but I learned that we are never "over it" with our heart babies. God is going to do something wonderful, though. He hasn't brought you all this far for nothing.

  18. I'll be praying for your little guy and for you.

  19. PRAYING bloggy friend!

  20. Keeping your family covered in prayer!

  21. I thought - I commented here- so sorry and yet thankful they caught it now...

    Saying prayers for Joey! (and for his Momma)

  22. Praying for that sweet and precious boy, his doctors/surgeons and his sweet mama!