Wednesday, June 12, 2024

All systems are a go for transplant

Bodie was accepted as a heart transplant patient by LPCH yesterday afternoon, and the insurance gave their authorization today. 
So, he was officially listed for a new heart as of 4:50pm today, with Active Status of 1A.

This means he needs your prayers more than ever! This has all happened so fast that our heads are spinning. But we need it to continue to move fast and for a heart to become available before next Wednesday, when he is currently scheduled for a VAD implantation if one doesn't become available before then.

I know it sounds crazy. 
Believe me, it does to us, too. 
But God has done crazier with this child many times. 
His wonders never cease and have been evident with Bodie so, so many times.

We used to call Bodie our 1 in a million child.
Turns out, we vastly underestimated him.

Odds of having Hypoplastic Left Heart Syndrome (HLHS): 1 in 5,000
Odds of having Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT): 1 in 10,000
Odds of having BOTH HLHS and CPVT: 1 in 50 MILLION

Survival rate of HLHS: 40% at 15 years of age 
Survival rate of CPVT: between 50% and 75% at 35 years of age 

The fact that Bodie has made it this far, with two such significant comorbidities, is nothing short of a miracle. 

We worship a God of miracles.
And we firmly believe He is not done with our son yet.
So please join us in fervently praying that Bodie gets his next miracle - and soon.

As a reminder, here are our specific prayer requests:
1. For Bodie's body and brain.
Being on ECMO for so long is so nerve wracking. Stanford is the leader in anticoagulation therapy in this instance, but that doesn't mean this plan isn't without risk. His body has responded so well to ECMO so far, which is why they're comfortable continuing, but clots could develop at any time. Every day on ECMO is a risk for clotting, brain bleeds and strokes. So please, please, please continue to pray for a hedge of security around his entire body, especially his brain! The CT surgery team was in his room twice today, examining and adjusting his ECMO cannula tubes, which have slipped a bit and started to bleed. Sedation and comfort are a tricky balance for Bodie right now, who wakes up like the Incredible Hulk, angry and ready to climb out of bed and leave the hospital. But, he's hooked up to a life saving pump that takes 99 acts of Congress to shift safely in incremental steps. And, you know, he's stoned out of his mind. Not a good combination. Please pray that we can strike the right balance of pain management to keep him calm and safe.

2. For a quick transplant listing.
Pray that the team gets everything done quickly to get Bodie listed as soon as possible. DONE!!! 

3. For the perfect donor heart to come quickly.
Bodie really needs that donor heart to become available quicker than we even anticipated, to lessen the amount of time he needs to be on ECMO. Please pray boldly that a heart comes in the next few days. 

4. For the donor family.
This is a tough one. Somewhere, a family we don't even know is about to go through the unimaginable, and they don't even know it yet. Please please pray for them. Let me be clear. We are NOT praying for someone to lose their life so that our son may live. That horrible, devastating loss is going to happen regardless of whether our son needs a heart. What we are specifically praying is that a family, in their greatest time of grief, will make the most selfless decision possible to allow their loved one's organs to give the gift of life to our son.

5. For peace for Dusk, Sierra and I.
This is hard, you guys. We're feeling somewhat at peace mostly because everyone has been praying. But also because Bodie's path has been orchestrated too perfectly to put him in this exact spot at this exact time for it to be anything other than God's ordained timing. That gives us so much peace. And we have SO MUCH faith in this medical team. We know they have evaluated all of the options and are taking this route because this is the least risky for Bodie, given all of the information we have available at this time. We can only see our limited view of our son. They can see the bigger picture, of what they typically see, of the trajectory these kids usually take, etc. And God can see the biggest picture. So please pray we can continue to lean into our team, and into God's plan. And just feel peace in it all. 

Tonight I will leave you with a picture of one of Bodie's best heart buddies, Tyler, who was born with the same heart defect as Bodie. Tyler received his new heart here at LPCH 11 weeks ago. He is a beacon of hope for us right now, and I dearly love his mom, Jennie. 
Tyler was so sweet and patient with Sierra and I today, as we ooh'ed and aah'ed over his pink lips and warm hands.

And a few pics of the boys over the years...
We cannot wait for Bodie to get his whole heart and be starting shenanigans all over again with Tyler! 



  1. Praying for miracles for sweet Bodie. Hold tight guys. We love u all so much. I will continue to beg any and everyone I encounter to pray for Bodie & ur whole family. Whisper in his ear I'll make him cookies just the way he likes them
    The Naki family is holding u in our hearts

  2. Such balm for the soul to be in the company of another who's been there during the hardest time of your life. No one understands like another heart mom. So happy Jennie and Tyler visited with you. That’s a God thing!- Michelle B

  3. Continuing to pray for Bodie, his brain especially, for a donor heart, a smooth transplant, no rejection after transplant, and for the donor family. And all do the above and for you, Dusk, and Sierra. Love you and love my Bodie💖🙏

  4. We have been praying for you guys and Bodie!! So glad to hear he has a heart match!!!