Back on the 11th floor

I am happy to report that we were moved out of the PICU yesterday and back up to our old home on the 11th floor! It is great to see familiar faces who know how amazing our Maddie is. I can’t even describe how great the care was at the Levine Children’s Hospital PICU was for us. We went down there Sunday morning early and had incredibly professional and caring nurses and doctors every minute through when they let us go yesterday. I hope never to go back (except for a visit), but I cannot imagine a more competent staff and excellent facility to save a child’s life. We feel incredibly blessed to still have our princess with us.

In preparation to be released yesterday to the 11th floor, Maddie had three lines removed, a central line, an ART line, and a peripheral IV. She seemed to relax after their removal and has basically just been sleeping ever since. Her breathing is still a little fast and shallow, so we hope that improves soon. She also continues to have low grade fevers, and she still feels pretty awful. We hope to see continued improvement each day, and that this will all seem like just a bad dream soon.

I don’t think I have ever explained how this all occurred, so I will try to give a brief explanation. Maddie has had recurring UTIs for last year. We have not yet found the cause of them, but in her case a UTI became a kidney infection which then became an infection of her blood. She has been on steroids for over 40 days, and they may have masked her symptoms a bit. So we suspected a UTI when she was acting like she was in pain Saturday afternoon. By the evening, she was developing a fever and we rushed straight in to the hospital. Our oncologist started IV antibiotics immediately to treat the UTI. By 6 am Sunday she was in septic shock and they moved us to the PICU. We could not get her blood pressure under control and she was starting to have trouble breathing on her own. They opted to intubate before she crashed feeling that a crash was imminent. We are so thankful that we had a positive outcome as it was incredibly uncertain.

Maddie is definitely improved from then but we still have a long way to go. Yesterday, we received the result that the previous day’s blood culture was still positive for the bacteria that caused the sepsis, so we are praying that the newer cultures remain negative. She has just begun to eat again, but she basically breastfeeds and sleeps around the clock. We are hoping that we begin to see some improvement in her energy level soon. Thanks so much for all of the prayers, but please do not stop just yet.

Love and thanks to everyone,
Liz, Brandon, and the incredibly amazing Maddie

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11 thoughts on “Back on the 11th floor

  1. How wonderful that Maddie is out of the PICU and back to the loving floor that knows her well. I am so glad that she received such great care and that the hurdle of the shock is now behind her. Now I am praying for her cultures to be clear, her to continue to improve, and complete health for your dear. Thanks for the update. We care so much for Maddie.

  2. We are so glad! Go Maddie go. We will continue to pray like crazy for you all. We love you and lift all three of you up in prayer every day. Maddie is such a special little fighter. Love, Taylor, Bill, Lucy & Francie

  3. You will always be in my prayers. That PICU staff is amazing and I can see you had the same emotional, but great experience with them that we had last year… as great as a stay in PICU can be!!
    Hug Maddie tight and enjoy that she is unhooked from all that paraphenalia and can cuddle! 🙂
    XOXOXOXOXOOO
    Kathy

  4. What a fighter Maddie is! We are so happy Maddie is doing better and out of the PICU. We will pray that she continues to get better. We have all of Reese’s readers praying for her.

    Kelly Erlain

  5. Way to go Maddie. What wonderful news. I hope you all get some rest and peace now that things have settled a little, a stay in the PICU will make you so tired. Hug Maddie for me.
    Love,
    Gina

  6. What wonderful news! And it’s heartwarming to hear of her fantastic care at Levine. You three are never far from our thoughts!
    Lots of love,
    Carrie, Zack, Elizabeth & Mary Margaret

  7. What good news to be out of PICU! We are so proud of how hard Maddie is fighting- she is amazing! We love you guys!

    Love to you all-
    Matt, Shawn, Conner & Ben

  8. Just popped in from the IS website to let you know we’re thinking about you. I’m so glad Maddie’s doing a lot better, and hopefully it’s just a matter of time till she gets her strength back up. I can’t begin to imagine what a rough time you’re having and it’s a real testimony to you that you’ve taken the time out to write on here – thanks XXX
    Nat and Eleanor

  9. Another pop in from the I.S. website – just want you to know that Maddie, you, and all of your family are in our prayers. Maddie is such a little fighter – I don’t have to tell you what a special and precious child you have. I hope and pray that Maddie feels better very soon. Hugs to you too – and prayers for strength. I can only imagine the tough days you have been through.

    Lisa & Gracie

  10. Dear Liz, Brandon and sweet Maddie-

    I am so happy to read that Maddie is on the 11th floor. I think about Maddie every day and love to read the positive updates. We will continue to say our prayers that God wraps his arms around Maddie.

    God Bless!

    Love- The Adams

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