Monday, October 14, 2013

Hoping and wishing and praying

(if only it were as easy as wishing and blowing on a dandelion...)

After mulling it over, discussing every possible cause of Bodie's low sats and blueness, and praying (and praying and praying and praying) for wisdom, we have decided to move forward with sending Bodie in for a cardiac catheterization. The truth is, his sats stink and he's far more purple and winded than he should be at almost 9 weeks post-Fontan. He's not dire, but he's not in a good place. We need to do something. It's time. It's time to see what's going on.

It is absolutely incredible how quickly everything has come together since that decision was made. Procedures don't ever come together easily and quickly for us, especially caths. It took us months to schedule his pre-Fontan cath and even then, it got rescheduled. But with this one, everything fell smoothly into place. As if it was always supposed to be this week. There is NO question in our mind God orchestrated it this way. I knew it this morning, the second his cardiologist told me she agreed he should be cathed, and this immense sense of relief washed over me. And I knew it as today unfolded and openings were in place exactly when we needed them. What sweet relief, to know if nothing else that this is God's plan for this week. 

On Wednesday at 11am, Bodie is going to the cath lab. We don't know if the cath will tell us anything we don't already know. For all we know, it will show that his heart and lungs look perfect and we'll be right where we are right now, except with another procedure under his belt. But on the upside, the cath could absolutely reveal something that can be easily addressed, his sats will come up and we move on with our lives, with a much pinker boy next to us. The stakes are very very high. If we had to estimate, we'd say maybe a 50/50 chance that the cath will reveal something that can be addressed. With those odds and a very blue little boy, we have to try.  

Our best case scenario is that the cath reveals a collateral to be coiled or a narrowing to be stented, or some sort of intervention that can be done within the cath lab itself. It is possible that the cath will show something that cannot be addressed in the cath lab (for instance, it's possible his fenestration needs to be smaller, but that can only be done in the OR, via another open-heart surgery), or even that it will show no interventions needed whatsoever. If that's the case, then at least we can rule out what's NOT causing his issues. And that's never a bad thing. 

Right now, he's limping along with sats in the 70s and 80s on a good day (he typically wakes up in the mid to high 60s), with blow-by 02 at night and when needed during the day, and he's maxed out on Sildenafil. 
He's not a fan of the 02. 
The nasal canula is a non-negotiable NO.
The mask isn't much better.
Despite our best efforts to sell it as a "cool storm trooper mask."

We're not a fan of the unknown. 

So to the cath lab we go.

Please, please, please, hit your knees and be in prayer for Bodie over the next few days. Please pass along Bodie's story to prayer groups you are a part of, share his story on your Facebook page, ask for prayers wherever you can. He needs them. We need them. We're nervous. We don't know that this cath will give us answers, or that we will like the answers we get. But right now, this is our best hope. 

WE NEED THIS CATH TO WORK. 

PLEASE PRAY WITH US THAT THIS CATH WILL CLEARLY INDICATE WHAT IS CAUSING HIS DESATURATIONS AND THAT IT WILL BE SOMETHING THAT CAN BE FIXED VIA CATH. 

PLEASE PRAY THAT OUR SWEET BOY CAN FINALLY GET ON THE ROAD TO RECOVERY FROM HIS LAST SURGERY. 

PLEASE PRAY FOR A SMOOTH AND SUCCESSFUL CATH, WITH NO COMPLICATIONS. 

PLEASE PRAY THAT HE DOESN'T CATCH ANYTHING WHILE IN THE HOSPITAL.

JUST...PRAY.
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13 comments:

  1. My thoughts and prayers for lil Bodie and the family.

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  2. Hey Bodie I'm prayin for ya buddy! Prayin that everything goes great tomorrow. Did you know that Mister George had an oxygen mask in the hospital? It looks really cool! Love ya little guy!
    Mister George in Annapolis, MD

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  3. Praying for you dear children of God, He already knows the outcome, we ask for that 50% stat to go to 100% answers. You are a very blessed little boy, Bodie your Mommy & Daddy were handpicked for you. You & your family are truly an inspiration :-)

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  4. Praying for all of you for answers and healing. Take care and remain strong! God bless!

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  5. Praying for you Brody ♥ sharing some prayer for mom and dad too!
    When my son has to have his mask on, we make a big deal about his "elephant trunk". The first time it was placed on his face he said he was an elephant so we went with it. Now we tell how smart elephants are and how they use their trunks to make sure the "good air" gets in their body. With all of the good air in their body, they "just get smarter ans smarter".

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  6. Prayers for your little guy! I hope it will be a quick fix for him.

    Stephanie, Noah and Caroline (HRHS) McKaskle

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  7. Prayers my sweet friend. I can imagine how hard this has been on everyone especially Bodie. Wishing for answers!!

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  8. Sending lots of prayers!!!! I look forward to your update.

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  9. Add y'all to my prayer list! Dusk used to live with my family when he went to CLHS, and I found your story through the Alumni FB group. Will be following and praying!

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  10. Yes, we will be praying! I'm so glad they got you in so quickly once the decision was made. Huge. Love to you all!

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  11. Do you know if there is any type of Heart Walk in or around SLO County? Or around Fresno...

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  12. God Bless You, Bodie and your mommy and daddy!!! God will protect you and I know a lot of people who are praying for you and your doctors!!! Prayers from Indiana!!!!

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  13. My daughter just tagged your blog to FB...her sweet baby is living with HLHS. I AM PRAYING FOR YOUR SWEETIE! We share your constant awareness of their needs for more than a typical child! God Bless!

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