Wednesday, December 7, 2016

At a loss...

We met with the heart failure team this morning and things did not go at all how we hoped and prayed they would go. Bodie's heart function is poor, his BNP is up even higher than it was 2 weeks ago, and some of his labs are troubling. We do not know why this happened, although there is speculation (including a theory that at some point during or after his last surgery he had a clot or embolism go through his coronary artery and cause scarring which caused damage to an isolated part of his heart) - but it is highly unlikely that his heart function will rebound. 
At this point, it is about managing him to get him to transplant.

To say today was a punch in the gut was an understatement. Although we always knew Bodie's heart wouldn't last his entire life, we did not anticipate having this discussion already, at 6 years old. 

Today the doctor actually said 

"I want to manage your expectations. This heart will not last to adulthood." 

There were tears all around, especially by Bodie, who shut down and told us afterwards through tears that he was sad because the doctor said he was going to die before he grew up. 

We explained that was NOT what she was saying, and that instead she meant the heart he has right now won't make it and that he'll need a new heart. And that NEW heart will let him do everything he wants to do now but can't (like run fast).  He liked that part (a lot!). 

This is so hard, you guys. So hard. We love this boy so much. And he has defied the odds time and time again. And our prayer is that he will so again this time around. But this news is new and hard to process, for all of us. (We haven't even told Sierra yet, but Dusk will after school today.)

They are scheduling us for a cardiac cath as soon as possible, to see exactly what we are dealing with, whether the heart function is worse (or better?) than it looks on echo, to see how his Fontan pressures look, etc.  There is a lot going on, and in order to know how best to treat him, we need to know what we're dealing with. That will also tell us whether we are looking at transplant more urgently or not.

At this point, we need prayer and we need it BIG. Please pray for Bodie's heart function to miraculously improve (since that's what it would take!), and for this cath to happen soon without any complications (this is huge as cathing someone with poor heart function is riskier). Please pray for his body to fight off bugs well, since it's hard for him to battle through viruses with depressed heart function. And pray for peace for all of us. What we thought was a detour appears to be a new destination for us - one we weren't packed or remotely prepared for. 

Friends, we need you to please please pray us through this. Because we're not getting through this without a heck of a lot of prayer fortifying us. 

Photobucket

42 comments:

  1. Teara reading this. We will pray with you for sweet Bodie, for his heart and his new heart... for your hearts... for all of it.

    ReplyDelete
  2. Like I said before...I see you. And no matter what...I'm walking through this with you - every second of it. I'm praying baby sister. Praying with my face to the floor and my soul exposed before His altar.

    ReplyDelete
  3. I am praying for you, Bodie, and your family. I'm so sorry. ♡

    ReplyDelete
  4. Praying for your family and your beautiful little boy. Saw this posted by Christie Saunders. For I know the plans I have for you.......💕

    ReplyDelete
  5. Always praying for your sweet boy! (((HUGS))) Amy... I'm not an expert with words so, we'll just leave it with a hug! Love ya!

    ReplyDelete
  6. Praying for you all, especially you Bodie!

    ReplyDelete
  7. In my heart and in my prayers! ((Hugs)) for all of you! Placing him and the family on our prayer chains! We have a mighty God and He will give you peace, comfort and fortify your faith! Love you all!

    ReplyDelete
  8. Prayers bring so many people together for one cause. People who don't know and never will know each other personally, but have the same desire. Prayers for this precious boy and prayers that he will have a bright future ahead. Prayers for his wonderful family that you all can stay strong.

    ReplyDelete
  9. This comment has been removed by the author.

    ReplyDelete
  10. Through tears, we pray.
    Aunt Linda & Uncle Bob

    ReplyDelete
  11. Praying for Bodie and all of you in your great time of need. Never forget you are not alone, God has you in the palm of his hand every step of the way. Blessings to you all.

    ReplyDelete
  12. I am praying very hard for your entire family.

    ReplyDelete
  13. Prayers for Bodie and your family ❤️ It's never easy for these hurdles but these warriors are amazing.

    ReplyDelete
  14. Sending love & prayers! <3

    ReplyDelete
  15. I am sorry you had to hear this news today, I am also sorry that Bodie had to think for a few minutes that he would die. I get very upset with Doctors bedside manners and feel they need to be more thoughtful in their words around Children (and Parents)
    You know that I will be Praying for your sweet boy and for you and your family as you walk through these uncertain times.
    I can only feel that it is God's perfect timing to get Bodie a special new heart to make all his dreams come true, especially running fast. A boy loves to chase his sister. :)
    Love to you all and many many continuing Prayers, and a special one for Sierra, as it is hard to hear news like that as a loving big sister.

    ReplyDelete
  16. Sending so much love and many, many prayers your way. Your whole family is in my thoughts and in my heart. xoxo

    Jillian (and Aurelia)

    ReplyDelete
  17. Praying! I can't even imagine dealing with all of this. You were right abt 2016 --- SUCKFEST!!!! Bring on lots of prayers, a new start in 2017, and HEALING for that spunky boy of yours!!!! ��

    ReplyDelete
  18. I'm so sorry to hear this!! Thinking of you all right now and the days to come. I <3 Bodie.

    ReplyDelete
  19. I am praying with great knowledge of what your family is going through. Praying with my whole heart.

    ReplyDelete
  20. Father, I lift Bodie up to You now. You are the God of the Universe and You are the God of hearts. I ask right now that You would heal this young one's heart. Completely. And as his heart grows stronger, I ask that his parent's faith in You would grow stronger. A full on miracle is what I am asking for today, for this entire family. Make the love You have for them, real; tangible. As You strengthen this little heart, strengthen this family's love for each other and for You. You are with them now. Touch them as only You can. Touch Bodie's heart. Let him know You love him. It is because of Christ's sacrifice and in His Name I pray. Amen.

    ReplyDelete
  21. Oh Amy...my heart aches for you. The Curtiss Family sends our love and prayers. I hope you will all find comfort in knowing that every step of this journey is in God's hands. Bodie is right where He wants him to be. -Jing

    ReplyDelete
  22. Praying and have already prayed for improved heart function and a transplant!!

    ReplyDelete
  23. God of mercy, God of love, shower your blessings on Bodie and his family. Show the faithful your glory! We pray for this son through Christ Jesus our Lord and Savior.

    ReplyDelete
  24. Cousin,

    My wife always says "the Lord wont give you more than you can handle" the faith he has in you and Dusk must be way up there. I have always enjoyed the news of your kids since they are the same age as our Anna and David. Loving awanas and each other. I look at my 2 as they sleep tonight and my heart aches for your family. Lord, please have your hand on Body and this family.
    How we long for the day when this kind of fear and hurt are no more! Lord please strengthen Dusk and Amy, We asked for you to have mercy on this family.

    Your Oklahoma Cousins

    ReplyDelete
  25. I am so sorry to hear of this new development. We will be praying for our Lord to bring about a healing outcome for your sweet Cody and for peace for you all. Hugs

    ReplyDelete
  26. Sending prayers and love to you all ❤️🙏🏻

    ReplyDelete
  27. This comment has been removed by the author.

    ReplyDelete
    Replies
    1. Sending your son and family prayers and love!

      Delete
  28. I fell in love with Bodie vicariously through my niece Ani. I had no idea what your family was battling until this morning. With every ounce of my being, I will pray without ceasing for the health of this beautiful boy and peace for your whole family. You have my love -- k'lyn matthews

    ReplyDelete
  29. Sending Bodie and your family lots of healing prayers.

    ReplyDelete
  30. Praying for you and your little man. <3 Prayers of healing and prayers of peace.

    ReplyDelete
  31. I saw your heart breaking story on social media through a friend's post. I am part of Waters Church in MA and we will add sweet Bodie and your entire family to our prayer list. We are praying for his miraculous healing and peace for you all.

    ReplyDelete
  32. THANKS BE TO GOD IN HEAVEN FOR THE AVENUE OF PRAYER. PRAYER IS POWERFUL. THIS COMING SUNDAY, AS EVERYONE IS ATTENDING THEIR PLACE OF WORSHIP, WE NEED TO ALL BE UNITED AND PRAY SILENTLY WHERE WE SET FOR THIS WONDERFUL CHILD. PRAYERS WILL BE LIFTED UP TO GOD IN A POWERFUL UNITED WAY. PRAY FOR BODIE!!!

    ReplyDelete
  33. Better yet, have your church announce to the congregation about Bodie and the whole congregation can join in on a prayer for him.

    ReplyDelete
  34. You have our Prayers from South Carolina...Wishing you all the best.

    ReplyDelete
  35. Prayers for love, light and abundantly skilled doctors (with a bit better bedside manner). And for the four of you that you can feel all of this love and prayers sent your way for miracles and exactly the right next step. Xo

    ReplyDelete
  36. Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord: And the prayer of faith shall save the sick, and the Lord shall raise him up.… — James 5:14,15

    ReplyDelete
  37. This is so sad. Please let Bodie know there are a lot of people on his side rooting for him.

    ReplyDelete
  38. Hi there, I'm one of the RNs attending OCF church and work at a hospital with a heart institute. For Bodie, I claim God's promise that He has plans for him to give him a future and a hope. May His Spirit guide and direct your steps for Bodie's course of treatment.I pay you find the right cardiologist and team that knows what to do with plan A, B, C, and D. May the Lord impress on my heart to pray for your baby daily till God answers and keeps his promise, in Jesus Name, amen.

    ReplyDelete
  39. We are praying at every thought of your little muggings Bodie. Hugs for you all and a few extra for Sierra. God be with you. xoxoxo

    ReplyDelete