The biopsies from Ela’s cath last week showed that she has Antibody Mediated Rejection (AMR Grade 1). Thankfully, the team had already intensified her rejection regimen by the time the biopsies were taken so she was already getting what she needed. Based on this confirmation from the biopsies, they gave her an even more aggressive treatment regimen that includes increased immunosuppression, steroids, antibiotics, and plasmapheresis treatments 3x a week for at least the next two weeks. Her most recent echo showed some improvement since starting this intense treatment. Ela will have another cath next week to see if the rejection has resolved and if anything else can be done at that time.
When it comes to rejection, there’s 3 main types—1) acute cellular 2) antibody mediated 3) chronic or graft vasculopathy. Ela has the middle one. It’s not the “best” type of rejection to have but it’s not the “worst” either. There’s a picture below of a document that has helped us better understand Ela’s type of rejection and possible future outcomes. It is scary that she has AMR this soon after transplant and there are still many unknowns for the days, weeks, months ahead. There is concern that this may turn into the the third type of rejection— the chronic rejection sooner than later. This next year (and especially these next 3 months) are very very critical.
Ela has not had very many good days in a while. She has brief good moments, but we are still a ways from where she was pre-transplant (when it comes to physical stamina). However, we have seen brief successes like her eating 2 chicken nuggets! This is the most we have ever seen her eat…and I mean EVER! We see glimpses of old Ela when she tries to weakly sing a brief portion of a song. We are thankful when we see these “little-big” things.
For the time being we remain the CICU hooked up to multiple continuous infusions as the team tries to still clear up her partially collapsed, fluid overloaded lungs and stressed heart. There are still concerns and so many unknowns for the long term. But she is improving…little by little.
We are thankful that God is still good and faithful. He is still strong and kind. Even on days when it doesn’t feel like it. He is our strength and our portion forever ….the Rock that is higher than I.
“My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”
Psalm 73:26
“Hear my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I,”
Psalm 61:1-2
The 1st and 2nd pictures below are the plasmapheresis process. The bag with the yellow is her plasma/antibodies being removed. It is being replaced with plasma and blood product that has been donated. So shoutout to all of those that donate blood/plasma! You help people like Ela.
The 3rd picture is the successful eating of 2 chicken nuggets!
The last 3 pictures are us taking her on a wagon ride outside for some fresh air. We have kind of gone backwards in our walking progress. So add her increased mobility and walking again to your prayers too!
Thank you all for your continued love, prayers, and support. We do read every message although we do not respond sometimes.
Continuing to pray for Ela, Leslee and Miguel as well as her medical team! Sending a big hug from WV!!!
Oh my so much to take in. Continued prayers. Thx so much for update. So sorry to hear all these setbacks. Poor baby and parents. So glad she ate! As u say enjoy the little big things. Love yall
Thankful for *some* improvement. Still praying. 🤲🏼
Praying for you all.. for healing, wisdom for drs, for peace, rest, joy, good news and good progress regularly, and for. Kids at home.
Sending y’all all of our love and prayers. You’re always in my thoughts. Love you all
Praying
Please know that we continue to hold each of you in unceasing prayer. Thanks for the update. It is always good to hear how everyone is doing. It also helps to pray specifically.🙏💕
Praying for each of you! Asking God to work a miracle in this new heart! Continue to cling to the promises of God and encourage you in each baby step!
Much Christian love & respect comes your way from NC (this is Tom Turley’s sister). Your Ela is a doll with her sweet smile & daily hair ribbons and you, Papa & Mommy, are an inspiration with your faithful devotion to her (& to your other babies) and with your encouraging words to the world. May you know Jehovah Jireh to be more than enough on this and every day and may you hear Him singing over you, especially in the quiet, lonely moments. Kindest regards and sincere prayers from my home to yours.
Continuing to pray for Ela, your family, and the medical team that is working with you all. He will be glorified!
Continuing to pray for Ela, your family, and the medical team that is working with you all. Praying for strength and perseverance for all!
You all are my first prayer each morning. Lean on the balm of the Word through the Holy Spirit.
Prayers that God can turn it all around for her.Prayers for her parents,siblings and grandparents
Prayers for Ela,her parents,siblings and grandparents
Thanks for the informative update. It’s wonderful you could all be outside for a bit even though it was obviously an huge effort to make that happen.
Tell Ela when’s she’s too tired to sing we’ll all sing to her and for her. Music is such a calming thing and is it’s own kind of medicine.
The verses you shared are wonderful and I’ll pray that God hears and answers those heartfelt prayers. Love, hugs and prayers to you all and to the army of people who are working tirelessly to figure this out. May God grant a great outcome in the coming days.
Thank you for the update, it helps in praying specifically.
May God continue a great work in Ela.
We have been praying for all of you…especially this little one. May God bless Ela with improvement and acceptance.
Prayers and tears and rejoicing with you at each setback and step forward. Love to you all!
Will continue to pray to God for Ella’s rehab and her body accepting the new heart.
God bless you all and keep you in His grace and mercy.
Will continue to pray for Ella’s body to accept the new heart and her rehab regiment will be successful.
God bless and keep you all during this trial.
We are praying with you and for you; and so appreciate your updates that help us in our praying for Ela. “The eternal God is your refuge and underneath are His everlasting arms.” Deuteronomy 33:27
We are praying!! Our ladies Bible study prayed yesterday for Ela and for you all … strengthened by His Spirit in your inner being and to know Gods deep love for you. Thank you for these updates. We love you all!
Thank you so much for updates. Continue to keep you ALL in our daily prayers. So sorry she is having to go through so much. Much love to you.
Miquel, the pictures of our sweet Ela bring mixed emotions but we KNOW our God is on His throne taking care of all of you. We will continue to pray for strength for all of you as you and Leslee look very tired. Much love sent! Buddy and Bonnie
Thank you so much for the update. I was anxiously waiting for news since your last post! Glad to hear the doctors are on top of the rejection process. Prayers for little Ela’s continued improvement! And for Mom and Dad’s continued endurance and faith!
I thank you for sharing your family’s story. May God wrap your entire family in His everloving arms. I am in Connecticut, helping care of my ailing father. I share Ela’s story with him. He is a recent follower of Christ. Your story of faith strengthens his own. We pray for Ela and your family. Much love in Christ