The day started with Zayne comfortable, alert, happy, and eager for a pasta breakfast. As usual, her eyes were much bigger than her stomach. I announced my plans for her to do a couple of school assignments during the day and to go for a walk around the ICU. However, by 9:30 she was slumped down, tired, and not talking much. We reviewed assignments,but she cannot concentrate, so opted to “read” a book that is narrated. Lesson learned – if she is happy and alert, go for a walk and do anything else that would use brain power.
While waiting for the biopsy results, we enticed Zayne to go for a walk to get a toy from the treasure box.
The biopsy results came back in the early afternoon. Not good news. In addition to the cellular rejection, she also has donor specific antibodies (DSA) attacking her heart. Another word that chills my spine – necrosis. I wasn’t prepared to hear that word when describing one of Zayne’s heart biopsy samples (out of 5).
DSA means that I got to learn about Plasmapheresis. Zayne was so scared about this procedure, that I had to lay with her in her bed and hold her hand throughout. I was in bed with her for 3 hours, because her lines clotted and had to be de-clotted – that was an extra hour. Basically, they processed 1.5 times her blood volume, replaced her plasma with albumin, and put it all back into her body. Those two PIC lines that were put in during her heart cath came in handy. She tolerated pretty well – there isn’t pain or discomfort, except for jostling the PIC and IV lines which hurts.
The transplant doc wanted me to talk to him when I was in bed, but Zayne wouldn’t let me leave so he had to come into the room to describe a new treatment strategy that he wants to try – Eculizumab. It is a relatively new treatment for heart transplant rejection, and I think it has only been used once before at Children’s in Colorado. With other large transplant centers using this treatment, and Zayne’s heart being in such bad shape, I gave it the green light. Unfortunately, she should have a Meningitis vaccine, but doesn’t have time to get one since the treatment is beginning tonight (well, at 2 am).
I attend rounds at around 8:30 am and 11:30 pm every day. She is tachycardic and they can hear a “gallop” when listening to her heart. There is a lot of other medical talk and acronyms that I try to understand.
Zayne is exhausted and is sleeping through her “Rabbit” infusion. The night time Lasix is being withheld so she should not have to wake up to pee multiple times during the night. It is a process to get out of bed – getting unhooked from some instruments and dragging lines around for the ones that can’t get unhooked. Zayne refuses to use a bedpan.
A therapy dog came to help get Zayne ready for bed. She was so happy, and got a huge smile on her face – it was good to see.
