Overall, Ela is in good spirits. Her blurry vision is gone (Praise the Lord!) and she continues plasmapheresis, bortezamib, and rituxinab treatments in attempt to get rid of this long term antibody-mediated rejection. The schedule changed some which means we will be in the hospital a little longer than anticipated. Now it’s plasmapheresis and bortezamib on Mondays. Wait a few days for the bortezamib to have its maximum effect. Then, on Thursday repeat plasmapheresis and bortezamib again. Repeat for a total of 4 doses of bortezamib and 6 rounds of plasmapheresis. She will have another heart catheterization w/ biopsies the last week of April to see if this treatment has worked. Last time we did this treatment course, it worked for few weeks and then we started to see things worsen again.
Yesterday’s plasmapheresis was… eventful. She was almost done with it, then suddenly she fell back, started sweating, her skin turned blotchy, blood pressure bottomed out, and she turned pretty blue and pale. She’s never had this happen and she has endured a lot of these plasmapheresis sessions before. Thankfully, she recovered quickly. It does seem like she is having more reactions to things these days.
Ela really misses her brothers and asks every day when she can go home. Praying this is just a 1 month stay and we can be home sooner rather than later! We fill our days with going to the library, making music, hanging out in the playroom, scavenger hunts, books, games, movies, arts and crafts, and of course still trying to get some school time in as well! She has her moments, as we all would, but really is resilient and has her hospital friends to help pass the time. As you can imagine, the nurses and doctors know her very well by now. Some of her little buddies that were around in December/January when Ela was last inpatient are still here too. Please pray for them as well. There’s 4 little kiddos around Ela’s age that are still waiting for hearts. I remember that wait.…it’s so so hard.
I’ll end with the verse that came up on my phone today that I found so encouraging.
Psalm 145:16-17
“The LORD is righteous in all his ways and kind in all his works. The LORD is near to all who call on him in truth.”
Thanks for update. Thankful for time with my visitor this week ♥️
Ela is a sweetheart. Praying, sorry to hear about her reactions. Sounds like you are doing a great job being a mom for her in this season. Praying you’ll all be back home within a month. Great verse.
Tell Ela we all miss her exuberant smile and can’t wait to see her soon! Prayers for all of you!❤️
Thanks for the update super mama. We love you both and we miss you very much. I love that verse!
Prayers for Ela and all the family. Hope you all will be back together at home soon. 🙏🙏🙏
“Oh, send out Your light and Your truth!
Let them lead me;
Let them bring me to Your holy hill
And to Your tabernacle.
4 Then I will go to the altar of God,
To God my exceeding joy;
And on the harp I will praise You,
O God, my God.
5 Why are you cast down, O my soul?
And why are you disquieted within me?
Hope in God;
For I shall yet praise Him,
The help of my countenance and my God.”
Psalm 43:3-5
I know you don’t know me, but our small group is praying for you and your family. These verses are special to me, first verses 3-4 brought me joy and strength to endure and then, some time later, verse 5 expressed perfectly what I was feeling over my child who was ill with a life-changing, lifelong illness. She’s one of the godliest women I know, all because she became desperately ill at 14 and had to learn to abide moment by moment in the Lord in order to get through. Prayers that Ela will be strengthened physically and most of all, spiritually, and for the boys and all the complexities of having an extremely ill sibling.
Thanks for the update! We, along with our church family (Johnston Chapel Baptist Church), continue to pray!
Wonderful verse! God’s promises are so precious. Thanks for the good update. You are in our thoughts and prayers often as we go through our day. Anticipating your return home with much excitement! May the Lord continue to give you much endurance. 💝
Oh my goodness so sorry about all this. Yall are all troopers for sure. She still looks precious and u look beautiful. Dont know how with all yall are going thru!!! Thx so much for the update. As always, love & prayers
Continued prayers for Ela. She is a real trooper. Special prayers for Mom and Dad and her brothers as you wait for God to do His will. Strength is certainly your testimony. Great verse to hold on to. Where would we be without the Lord and His care? ❤️
We love you so much and look forward to your pics with your updates. We pray the Lord gives you the strength, peace, and wisdom. Love and prayers, Uncle Steve and Aunt Michele