Thursday, June 27, 2024

2 weeks down...a lifetime to go

2 weeks ago tonight, Bodie was in the OR awaiting his gift of life, and we were waiting anxiously to hear that he had come through surgery and his new heart was beating safely in his chest.

It's been a long 2 weeks, with many ups and downs.

All in the course of receiving miracles, I suppose.

They unfold in their own time.

We just get to witness them.

Today, I got to see my boy fully come back to me.

Not just little glimpses of the silly, sarcastic, smart, deeply feeling boy we put onto Ecmo almost 3 weeks ago. 

But big ear to ear smiles.
He actually asked to go out on the patio today!

He Facetimed with Sierra, who was the best big sister and found the perfect filter for our horror loving boy:
And laughter. One of his nurses said today it was the first time she had heard him laugh (for the record, it was because she had asked him if he had any siblings besides Sierra and when I said no, he looked at me with a smirk and said "yeah, how are you coming on that?")

Tonight, he asked to get out of bed and sit in the chair (which is hard work for him physically) and watch The Shining with me:
 
He still has a LONG way to go physically. But he has to start somewhere, and today he really did. Today was probably the first day the delirium was gone enough for him to have the energy to really engage in PT - and, for the first time since surgery, he WALKED! 


He had a repeat ENT scope today, and although he is making a very small amount of sound now, which is amazing to hear, it's not actually coming from his vocal cords, but from the muscle in front of them. The ENT still isn't seeing movement in either vocal cord. Which means he's still not cleared to eat or drink. :-( We need prayers for this, please! I've asked speech to come reassess to determine whether, now that he's more alert, he's better able to protect his airway and might be cleared to eat and drink again. Hopefully that will happen tomorrow.

Speaking of tomorrow, Bodie has his 2 week post transplant cath tomorrow, which is a big deal! They'll be looking at the pressures in his heart as well as doing a biopsy of a small portion of his heart muscle. Both things are designed to check for rejection. Transplanted organs can be rejected at any time, but the highest risk for rejection is in the first year, especially within the first few months. So tomorrow's cath will be critical for Bodie. 

That said, we'd love your prayers for the following:

1. Pray for Bodie's cath tomorrow
Pray that it goes smoothly, that he doesn't need to be intubated (we want to baby his vocal cords right now!) and pray for NO REJECTION of this beautiful new heart!

2. Pray for Bodie's vocal cords
Pray for immediate healing of both of his vocal cords, so that he's able to eat and drink again safely.

3. Pray for his body to continue to heal and strengthen
He's working so hard in PT and OT and I'm seeing his strength starting to come back. But he wants to be more independent and have at least the strength he walked into the hospital with. Please pray he continues to be strengthened in his body and mind.

4. Pray for the donor family
As we celebrate Bodie's first 2 weeks with his new heart, I know the donor family is marking today in a very different way. I'm certain every anniversary must bring new pain and sadness. Please pray for extra measures of grace for them. 
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4 comments:

  1. Wow what incredibly good news!! One moment at a time and a long ways to go but hooray!! Praise God from whom all blessings flow for the gift of this moment!!

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  2. Send my most deepest prayers for Bodie today and each day going forward. A special prayer for his vocal cords. Praise God for giving Bodie the strength and watching over him.

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  3. Absolutely love you sharing . You are a great mom Amy . -Melissa Dauer

    Team Bodie !

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