Pressures and prayers

“So, Mom….how has his oxygen been at home?” the nurse today asked during our normal visit.

“Umm…around the normal range for him.  Just a few dips into the 60s…but never for a long period of time.  He’s been active and playful as always!”

Her brow furrowed.

I knew something was wrong.  I could feel it in my gut.

After 2 oxygen probes, position changes…our squealing boy….the one who has reached milestone after milestone…the one who keeps surprising doctors with how well he’s been doing…gave us another surprise.

Evan’s oxygen level was much lower at our visit than it had ever been at home.  So much lower….our super conservative cardiologist said something radical,”Guys…it’s time we move forward with things.”

Things?

The kind of things that makes every heart mom take deep breath because suddenly all the wind has been knocked out of us.

Tomorrow, my Evan will have a heart catheterization to check pressures in his heart.

Tomorrow, my Evan will finally reveal to the us what he needs.

Evan’s complex heart condition poses quite the conundrum amongst the team of the doctors here.

He has defects that when separate….are repairable without any issues.

But, when you put them together…well…it complicates things.

Everyone’s hope is that they will be able to do a full repair surgically in one big surgery and then later down the line…tweak things a bit if needed.

But, we have to keep an open mind about what plan B can be.  And that is a staged surgery – one happening now and another one happening in the next few years.

But, we can’t forget about plan C.

Plan C happens when the surgeon opens ups my son’s heart, assesses what he sees, and then goes from there.

Yes.

You read that right.

Sometimes Plan A and Plan B are thrown out the window once the surgeon gets his hands – literally – in the case.  And then…the mind takes over the matter.

My surgeon – who I’m asking to perform a miracle on my boy – will have to use every God given gift to save my son.

And…all of this? The plans…all depend on tomorrow’s heart catheters…the pressures in his heart…in his valves…

Oh the pressures.

I’m at a loss for words right now.

I can barely breathe.

I miss my boy’s smile.  He’s been upset since he’s been poked and prodded all day.  He looks around and doesn’t understand why sister isn’t around.  Why did Daddy leave?  Where’s my sport’s mobile?  Why is Mommy crying so much?

I miss my best girl.  I miss her attitude already.  I am trying to hold onto the sweet moment when she came barreling into his hospital room today and Evan smiled his big ole grin for the first time in hours.

I miss my best friend.  Craig’s aching heart and his tears today as he held his boy broke my heart further.  I’m not sure what he whispered in his son’s ears but it’s a special secret between the two men in my life.  As he left tonight with Iz…my heart ached as he wiped his tears once more and picked up his boy and said, “You take care of Mommy tonight.  You’re my champ.”

We don’t know how long we’ll be in patient this admission.

The plan…is for Evan to have his open heart surgery within the week.

Oh the pressure.

So, as I sit here and type…no tears since I’m depleted…I beg and plead for prayers for my boy.

I beg for prayers for a successful cath tomorrow.

I beg for prayers that Evan stays free from complications.  He will be intubated and under general anesthesia during the procedure.

I beg for prayers that he recovers well that he able to come off the ventilator with no issues and infection free.

I beg for prayers that the surgeon, the intensivist, our cardiologist come up with a plan that will give my boy many years with us.

Because friends…please remember…every prayer for healing…every prayer for my son….is just an extension of the prayers for me, for Iz, for Craig…for his family that he loves to much…for our friends who are so invested in our lives and love our boy like we love him….

You’re praying for so much more than just him.

You’re praying for the piece of our family that makes us whole.

I’ll be updating as often as possible.

I would be in your debt if you could share our story and have others pray for Evan.

I’ll be doing the best updating I can on here but I will update on Evan’s prayer page on Facebook:

https://www.facebook.com/AMillionHeartsForEvan

 

Thank you for your prayers.

Comments

  1. You might be out of tears but I am a hot mess over here! xoxo

  2. Buddy, how are you so strong? I know you think you’re not but I’d be in a hole some where right now. I wish there was something I could do. We are praying.

  3. Marsha Sikes says:

    What a powerful story, My family and I will say many prayers for Evan, you, Craig and Iz! God has his arms around you, holding on tight and won’t let go!

  4. NANA REYNOLDS says:

    I KNOW THAT GOD HEARS OUR PRAYERS, AND WHEN THEY ARE ABOUT CHILDREN, HE IS ESPECIALLY ATTENTIVE, FOR YOU SEE THEY ARE SO PURE AND INNOCENT, AND DON’T UNDERSTAND “WHY” AND THEY NEVER QUESTION GOD AS WE SOMETIME DO. HE HAS HIS HAND ON YOU ALSO, BE STRONG AND KNOW THAT HE IS AN AWSOME GOD, JUST START THANKING HIM NOW, FOR THE GLORY THAT HE IS GOING TO RECEIVE FROM THIS HEALING.GOD BLESS YOU AND SOOTHE THAT HURTING HEART OF YOURS, HONEY.

  5. Susan McElroy says:

    I am a good friend of your friend Courtney Graham’s mom (in Houston) and Courtney (have known her since she was 3 years old. She passed your information on to our group of friends for prayer.
    Am praying this morning for you and your sweet family … For the doctors… For all the things you listed and more. I believe our God is still in the miracle business and intent on showing Himself. May He give you strength, courage, and comfort to face today.

  6. I too have a special needs little boy. He has a rare, incurable, degenerative disease. My heart goes out to you. I know that God loves my sweet little boy even more than I do. I know that God has been with us every step of the way. I know how much it hurts to see your little boy unhappy and in pain. I know that it is hard. I know that I wouldn’t wish this journey on anyone. I know that I don’t have any answers (for either of us). I know that I’ll be praying for you all today.

  7. Praying for you all sister!

  8. I have prayed and will continue to pray for Evan and his family. God IS a Healer (Isaiah 53:5) and He is able to do exceeding, abundantly, ABOVE ALL that we ask or think…(Ephesians 3:20).

  9. Praying for sweet Evan, for his surgeons, for his nurses, and for you, his family. Praying for protection and healing for Evan, praying for wisdom and skill for those caring for him, praying for peace for his family who loves him so. And specifically praying for you to feel His presence at every moment.

  10. Karissa Green says:

    I am sitting here reading this and weeping for you. I don’t know who you are, other than a mommy who loves her little boy. I have been in your shoes, different situation, and I am weeping for what you and your family are feeling. I pray for wisdom for the dr’s. I pray that God’s peace that passes all understanding will wrap you up and sustain your family. Love, another praying mommy.