Saturday, June 8, 2024

Holding Steady

Bodie's now been on ECMO for a little over 24 hours, and so far, so good. It's definitely a dance making sure he's anticoagulated enough to not throw clots, but not so anticoagulated that he risks bleeding out. He did have a bleeding episode last night that unfortunately required 2 blood transfusions (NOT ideal when you're evaluating for transplant and you're already highly sensitized with high antibodies, but it is what it is and it was necessary). Thankfully, they got the bleeding under control and he's been stable since. 

The general consensus is that, even if we were able to get his rhythm issues fixed, at this point, his function has deteriorated so much that his function just wouldn't improve enough to sustain him. So the next few days will be spent (1) finishing what we need for his transplant evaluation (any remaining bloodwork, end organ scans, family interviews with social work, psychology etc.) and (2) determining the best method of bridging him to transplant, assuming he is listed. 

Dusk and Sierra got here late last night, and it's been so wonderful to have them here. We're all exhausted, and a little punchy, but it was nice to spend time together. 
They'll be here for a few days at least - beyond that, who knows. 

And I have to say, I am SO proud of Sierra! I was worried about how it might be hard for her to see Bodie in this state, but she didn't skip a beat - went right into the room and to Bodie's bedside. And she wasn't afraid to touch him and to ask the nurses questions. She was so brave. I am so incredibly proud of her!

Bodie is still very sick and still desperately in need of prayer, but things are going as well as they can be under the circumstances. 

Please please pray:
1. That Bodie's brain and body continue to be protected while he's on ECMO. 
2. That Bodie's heart and organs continue to heal from the trauma of low profusion, CPR and being placed on ECMO.
3. That they can quickly do Bodie's transplant evaluation and determine that Bodie is a good candidate.
4. That the doctor's have the wisdom to select the best mechanical support to bridge Bodie to transplant.
5. That Bodie can be safely transitioned from ECMO to whatever mechanical support is chosen.

I'll leave you with this pic of Bodie's little hair peeking out from under the cap on his head for the EEG (brain monitor). Sierra and I were cracking up and I just had to snap a pic.  
If you know our family, you know we use humor to get through the tough stuff. So we have to find humor where we can, and his little teeny tiny ponytail was where we found it this afternoon. 


  1. I love your humor . Know that we respect your humor . Praying -Melissa Dauer

  2. We are praying for you, Bodie!! Keep fighting sweet boy!

  3. We love Bodie and his big ♥️

  4. The Swanns are praying with you and for you all. May God be with Bodie, and may He answer your prayers. 🙏🏾

  5. Love & prayers for your sweet son & each of you who love him & are praying for a perfect outcome ....

  6. I continue to pray my friend. My Bodie is a fighter 🙏

  7. Michelle Bartell here, been glued to your blog. Our family and friends are praying. Bodie holds a special place in our hearts, your whole family does. Love you mama. Praying for supernatural peace to overwhelm you.

  8. Love you Bodie! We are praying for you here in Ohio. May God watch over you and protect you. May he shield your body especially your vital organs. Stand by your parents as well as your sister and never let them forget the love and support they have surrounding them. Thank you for the doctors and nurses and for the service they are providing for Bodie as well as the family. In Jesus name 🙏

  9. We are praying fiercely for Bodie. Praying for total and complete healing in the name of Jesus 🙏🏼❤️ - Katherine Barker (Little)

  10. Continuing to pray for all of you and especially my Bodie 🙏💖

  11. Amy, you are all in my prayers. I have so many prayer warriors lifting you up. Our pastor and his wife went through a heart transplant with their son around the same age as Bodie. ❤️ We love you! Psalm 23 is where I gravitate. May the peace that passes understanding surround you. Oh, I loved his ponytail. 😆 Awesome! Love, Erin Fuller