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