Still Seeking Answers

We came in To the ER on July 28th with what we thought was a fever and potential rejection. Since then, we’ve chased more questions and found each one met with more confusion. John and I know there are so many people who love our family and want an update, but this has been a very painful and confusing time, with little to share that felt concrete. But here’s our best attempt to share Hope’s recent challenges with friends and family.

She spent one week on a mechanical heart pump because her heart was in failure for what was assumed to be severe acute rejection in her heart. She came off the mechanical support and, instead of getting better, seemed to only plunge deeper into a confusing pool of troubling symptoms that didn’t add up to a diagnosis, the most concerning among them was kidney failure.

Transplant decided to reevaluate her for a new heart transplant, knowing we’d need to run a parallel path to figure out what was going on in the kidneys. We asked for second opinions. We were told it was unlikely that Hope would survive the next two weeks without mechanical support again, which they were unclear about offering based on the uncertainty with the kidneys. The message was subtle, but clear: these may be the last few weeks you have with her.

Finally, a piece of evidence emerged that brought serious doubt as to whether rejection was the wrong assumption and something much more dangerous was running amok. She has all the clinical signs of a condition called thrombotic Microangiopathy or TMA. If you want a laugh and to learn what this is, google CCHMC’s video with Como the dog that explains this condition. We’ve since learned Hope has a genetic mutation that makes her more prone to a specific type of TMA called atypical-HUS, triggered by the combination of her immunosuppressant therapy and/or the presence of paraflu, which she had in July.

The only definitive test for a-HUS is to biopsy the kidneys, but that was deemed to great a risk and we began treating as soon as TMA was suspected, since August 23rd. The bad news is that she only continues to get worse. Her kidney function completely deteriorated and she is on continual dialysis, pulling off 2.5 liters of fluid in the first week because of how dysfunctional her kidneys had become. Her liver plunged into failure and she turned jaundice. She couldn’t breathe well or control her fluid balance when changes were made to her dialysis plan. The team wanted to get her dialysis line switched and we thought it would be the prefect time to get biopsies of the liver and kidney and get some damn answers about what exactly was attacking these organs, to what extent, and whether they have been damaged beyond recovery.

The icing on the cake was the discovery of a clot in her SVC right near the atrium to her heart. Her head swelled up like a bobble head doll. We had to treat it, but at a large risk for internal bleeding and hemorrhagic stroke – so any thought of surgical procedures/biopsies was out the window. We started treatment and it wasn’t long before internal bleeding was suspected. This eventually led us to a CT scan that revealed three things. First, she had suffered three small hemorrhagic bleeds in her brain. Second, the clot had broken up enough to restore somewhat normal flow from her brain to her heart. Third, the suspected bleeding was actually a mass in her colon and no one is going to do an abdominal procedure on her with an unknown infection or source of inflammation going on. All our answers were put on hold, while we tried to convince GI to do a scope on her to get a clear idea of what it is.

So that catches everyone up to where we are. She went down to the OR for her scope and bone marrow biopsy this morning and with any luck we will be able to name one of the many culprits attacking her body by Friday when results are back. Once we’ve cleared that, we can once again turn our attention to the kidney and liver to help determine her long-term prognosis.

To be honest, Hope’s medical team is not really sure if she will be able to fully recover from this setback and ever return home again. Our hearts are broken and we have been grieving for the last few weeks as a family. All we can do at this point is pray for Hope’s path to be made clear to us and her medical team.

We thought we’d share one of our favorite videos of Hope as a parting gift for this rather dreary update. It captures her infectious laugh and determined spirit so perfectly. We promise to keep updates coming!

Love – John, Hope & Tess Sansbury

21 thoughts on “Still Seeking Answers

  1. She has been keeping you all on your toes with pulling out lines! 🤔 if you get a chance look up the FB page BEATS FOR JACE. He has the same thing as Hope, and it may give you a little bit of inspiration. We love you all, and I’m sure it’s tiresome to hear, but still praying! 💞

    Liked by 1 person

  2. So sorry to hear of all the issues Hope has been experiencing. I can only imagine what you and John are going through as you watch your beautiful daughter get so sick. I know your friends and family are all still praying for a miracle.

    Liked by 1 person

    1. Tess & John,
      My prayers are with you and little Hope. She is a true fighter and you are her heroes. I am hoping and praying the doctors find a cure, that you get the answers you need to make the best decisions you can, and most importantly, that you bring her home soon. You are so strong. You’re in my thoughts. 💗

      Liked by 1 person

  3. Tess, thanks so much for sharing. So sorry to hear about Hope’ issues. Hope is a feisty little fighter. Stay strong and I continue to pray for Hope and her surrounding family and close friends. It’s in God’s hands, now. Just loved the video of her…so cute!

    Love and miss you.

    Liked by 2 people

  4. My heart is breaking for you John & Tess. I can not imagine all of the obstacles. I am praying and praying and praying more! The video is so precious! Hope is sweetheart! May God bless all of you and keep you in his care.

    Liked by 1 person

  5. Thanks for taking the time to provide an update for us. We love Hope so much! We are all surrounding you with our love and prayers for strength, answers and comfort ❤️

    Liked by 1 person

  6. I know it was difficult for you to write this post, but hopefully also therapeutic for you to put this in words.
    Our hearts are breaking for Hope & you & your family, but we are also still praying for a miracle for Hope. I pray for you, Hope,& her medical teams to find the right course of action/treatment.
    We might not be there physically, but so many are with all of you spiritually & asking God to put his arms around you & your family

    Liked by 2 people

  7. Oh my goodness. I don’t know where to begin. I continue to pray for Hope to have the strength to fight all of these challenges being thrown at her. I pray for her medical team to find the answers of what is causing these challenges and a treatment plan that will bring her home. I pray for you and John to continue to be her advocate, fight for her and bring home your baby girl. My thoughts and prayers are with you all.

    Liked by 2 people

  8. Oh my goodness. I don’t know where to begin. I continue to pray for Hope to have the strength to fight all of these challenges being thrown at her. I pray for her medical team to find the answers of what is causing these challenges and a treatment plan that will bring her home. I pray for you and John to continue to be her advocate, fight for her and bring home your baby girl. My thoughts and prayers are with you all.

    Liked by 1 person

  9. I love this girl and her smiles. I love snuggles and the sweet photos of you both with her. I love her eyes and the joy she fills me with every time I think of her. I am proud of her strength and yours. I am in awe. There’s no giving up in those eyes and I marvel at her endurance and yours. May all the strength be with you and her care team. I believe in miracles and pray for little ones — and big ones — for you all. Much love.

    Liked by 1 person

  10. I am at a loss for words for all that you all have been through. My heart hurts so much for your entire family. I am stilling praying for miracles for your sweet baby and I pray for strength for you and John throughout this journey. I pray that God will reveal to her care team a course of action that can be taken to heal this precious baby. I pray that God will give you and John strength, peace and comfort no matter what happens. Although no one knows the reasons why these things are happening, please rest assured that God knows and he WILL help you all get through this if you will lean on him. My thoughts and prayers are with you all every minute of every day!

    Liked by 1 person

  11. Oh my heart, that video shows her spirit and spunk, thank you for that! I pray for a miracle, her medical team and for you and John. What incredible parents you two are! May Jesus wrap his arms around you all with his peace, love, mercy and grace. With love and prayers morning and night ❤

    Liked by 1 person

  12. You all are such amazing parents!!! Hope is so precious and I know our God is bigger than all of this! Praying his hands are on your sweet family! Love you all!
    XOXO
    The Safleys

    Liked by 1 person

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