Ela had a Rituxinab infusion in January and an IVIG infusion this past Friday. These infusions are to help treat her antibody-mediated rejection that was better, but still present when she was discharged in early January. Thankfully, most of January and February she had lots of good days. However, these last two infusions she has had some sort of reaction which is scary and disappointing. She needs these infusions, but there can be side effects and risks. Please say a prayer for her when you read this, as she is still fighting some of these side effects currently.
Friday’s labs and echo had some concerns. Her BNP (number that can indicate heart failure/rejection) bumped up again, and on echo it looks like there’s some more left ventricle thickening which is what was evident when her rejection was worse back in December. We are still waiting for the Allosure heart test (a more reliable test to indicate rejection) and her antibody tests to come back so we can have a clearer picture as to what may be going on. Those tests will result early next week. We had hoped for better results this visit, but we know things could be worse. Right now, we are thankful they are not. If the Allosure test comes back higher or the antibodies come back higher, then we are looking at another heart cath w/ biopsy sooner than later and maybe even more interventions although we don’t know exactly what that would look like right now. So for now, we wait…again. Lots of waiting….Lots of unknowns….
Last Sunday, we sang a song in church that is very personal to our family… “The Goodness of God.” The phrase, “with every breath that I am able, I will sing of the goodness of God” has such a stronger meaning to me now as I reflect on Ela early post-transplant. Ela would try to sing this song with oxygen attached to her face as she labored for each breath. She still sings through her pain and discomfort. This girl has no idea how she encourages her momma and helps steady my restless heart, when she still has a song in her own heart despite the pokes, ouchies, and difficulties she very often finds herself in. God uses her song and voice to remind me to re-focus on Him, His promises and all the wondrous works He has done. This week in our travels to Philly she and I have enjoyed the song, “Praise You in This Storm.” The chorus states:
And I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
Psalm 145:21: “My mouth will speak the praise of the LORD, and let all flesh bless his holy name forever and ever.”
Praying for comfort, peace, and endurance for your family. Praying for healing for Ela! Psalm 95:7 For he is our God, and we are the people of his pasture, and the sheep of his hand.”
Praying for all these specific things, for Ella. Including Mommy and Daddy…🙏😘
You are in my prayers. May God pour all his healing prayers on Ella and family.🙏🙏🙏
Tears and Prayers!
Continuing to pray for each of you. Ela is such a joy and to see her on Wed. nights running around in the gym, you’d never know there’s anything going on. She is an amazing girl for sure! We will be praying for you guys!
Praying for Ela now. Thank you for your post and willingness to Praise Him in the storm. Love you all
Continued prayers for Ella and her family. In case you have only heard the Casting Crowns version of “Praise You In this Storm”, here is another slower version by Natalie Grant that is so beautiful.
https://www.youtube.com/watch?v=DJdd5OXZNZE
Psalm 94:17-19
What a trooper!! Thanks for letting us know so we can keep our prayers current. Your patient endurance as parents in hard times and suffering is also an amazing testimony to us all. May the Lord continue to grant you strength and peace. 🤗❤️
We appreciate your update. Please know that our love and prayers are with Ela and her precious family!
Thank you for the update. Your testimony is such an amazing blessing. Praying for God to give you endurance, peace and comfort through this valley you are traveling through. May God bless each of you.
Love and Prayers ♥️🙏🏻
She is learning very early that God doesn’t always do things how we want Him to do things. He knows better. You are also teaching her that God is with her in her suffering. This is such a valuable lesson. Our prayers are continuing for Ela.
Praying for Ela and y’all. God bless.
Aw this made me cry for her and yall but also rejoicing shes such a blessing and strong girl, as yall have taught her to be! This Goodness of God gets me everytime and esp now as my daddy loved it and we had cc winnons singing it played at his funeral🙌🙌
Ive been looking for updates and so happy to get one. Thx again for updating us! Glad shes had alot of good days too
Our prayers go out to y’al and may you continue to to trust in God’s faithfulness. Thanks for the updates 🙏🙏🙏