Biopsy results confirmed that Ela does indeed have antibody-mediated rejection (AMR). Thankfully, it’s grade 1 out of 3. However, this still means a pretty extensive treatment plan. She goes for another sedated procedure Christmas Eve morning where the Interventional Radiology team will suture a double lumen catheter in her neck so that she can start plasmapheresis. Over the next few weeks, yes weeks…..She will do at least 5 rounds of plasmapheresis, continue steroids, and another treatment called rituxinab. After these treatments are completed (probably in about 2 weeks), she will have another cardiac catheterization to see if heart pressures look better and if biopsy still shows signs of rejection or not. The team will also draw a slew of blood tests done in conjunction with the cath. Then, after all the results are in, they will re-assess and see if she still needs further inpatient treatment or if she is at a place that we could do most of the treatment outpatient.
This is hard news to digest. Definitely not how we envisioned the holidays this year and her birthday. She turns 6 on the 30th. It’s been a rough couple of days. She’s been poked and prodded so many times. She’s in pain, uncomfortable, and confined to her room (meaning we have to tell her that she can’t go to the play room and see other people) until all other testing shows that she isn’t sick with any other things. It doesn’t get easier to watch her suffer.
There’s a lot of negative right now or at least that’s how it feels. So we are really trying to find the things to be thankful for…It helps put things in perspective and re-focus.
So…I’m thankful that her AMR is not worse than it is, that we have the Gift of Life House to escape to for a few hours a day, that she gets to enjoy music and art therapy even in her room, she’s still able to eat, for people praying, that Miguel’s been able to be here with me, the boys are taken care of, and that my God who understands suffering is with us in this. He uses suffering for His glory. It is not in vain even if it feels that way sometimes. And I am thankful for Christmas (even in a hospital). Without the very first Christmas there isn’t a Savior, a cross, a resurrection, or an eternal hope. So may my heart, our hearts focus on what Christmas truly is and be joyful in that despite all the disappoint, struggle or grief that may be surrounding us this holiday season.
There weren’t very many smiley moments today but this was one that we all needed!
Our hearts are broken with yours, but we serve a mighty King who makes miracles happen. We rejoice with you also that the rejection is in early stages and there is a treatment available, even though it will be tough to walk through with Ela. We are praying and we send love to you all. Thanks for updating so we can pray specifically for Ela’s needs and yours. May this Christmas bring unexpected joys and miracles to your family. God bless you.
I m praying continually for the Lord to supply every need. This is so very hard, but I do thank the Lord it is stage 1 and treatable. I pray the boys are given understanding beyond their years. I pray for side effects to be minimal. Oh so many things! God is able and not overwhelmed. ❤️🙏
Praying for you guys right now! God is in us God is with us God is for us . Immanuel. May the light of the world lighten your load and shine in the darkness.
Thanks for the update and thanks for your beautiful and true words about Christmas. Praying, praying for Ela, for you guys, and your whole family.
Thank you for the update! Disappointed with you, but thankful that she is only stage 1. Encouraged by your positive thoughts. Praying much for Ella…and each of you!
Praying for you all….through Gayle, we think of you all as “ours”…. love you 💜
I am praying for you. Holidays in the hospital are so hard but I found that they were harder for me than they were Grace. The staff always made the day special. I hope that’s the case for Ella. Grace has had the treatments Ella is getting and it is just so hard on their little bodies and so hard to watch them go through it. Again, I’m praying for strength and endurance for all of you!
Thanks for the update. We so admire your godly attitude and perspective during these days. Praying Ela will respond to the treatment plan very well, for good spirits among your family, and that you will continue to see God’s goodness, kindness, and strength.
Praying for you an extra abundant measure of sufficient Grace, Peace that passes all understanding and the Joy of the Lord that will give you Strength. Emmanuel IS with you.
Thanks for sharing Ela’s tough update—heart goes out to you all. Praying her treatments go smooth, body responds great, and those little joys like music therapy and Gift of Life House carry you through. Merry Christmas amid it all! Love you guys!❤️🙏
Oh Leslee, how hard this must be for you and Miguel. We are enlistevery prayer warrior we can think to ask to send prayersvto our mighty God. Merry Christmas!
Our prayers are pouring out to God for comfort, healing and relief for Ela and you and Miguel. Thankful that you are able to also see the blessings along with these very hard trials. Love and prayers as always.
We are praying! Not the news we wanted to hear! We appreciate you guys, nothing …. Nothing worse that seeing your child hurt !
Our hearts ache for and with you. You’re ‘yoke’ does not seem easy or light but you have done a great job of looking to see who is in the yoke with you. As you look at Jesus, may he help your yoke seem easy and your burden, light. May you find the rest he promises as you come to him. God bless you this Christmas in ways you could never dream of. Love and prayers always!!!
We are praying, praying, praying 🙏🙏💖💖
We are praying, praying, praying 🙏🙏🙏💖💖💖
I’m so sorry you’re going through this, and especially at Christmas. Praying for your momma heart and all your babies as you take care of Ela.
Prayer carries us in times like this. May you find God’s presence and peace as the doctors care for sweet Ela. She is a special treasure God has given you and I know it breaks your heart to walk with her onthis journey. God does His good pleasure so we know He will be in the midst of her care. Thank you for your example of trusting the Lord when it is very hard to do so. May He fill your heart with lots of love.
I am just so sad with you all for this news and the difficult journey for all of you. We are praying for you all! <3