It took a lot for her body to recover
As far as transplant, she did very well. She didn’t really have rejection issues too much. The big thing was her risk of infection because of being immunosuppressed, and then her kidneys and lungs. Her kidneys and lungs had both been through a lot and had some damage… So that balance of fluid was really hard…we went home after six months of being here. And then that winter, I would say, six out of the twelve next months, I was here with her, being in and out of the hospital with lung issues or kidney issues or – not necessarily complications from transplant, and yet, just because she had been so sick and also because of being immunosuppressed, so indirectly it was a complication because of being immunosuppressed from the transplant. And then at the end of that, she was doing really well and we came up for an appointment and she ended up getting RSV and then ended up having a two-month stay in the hospital again on the ventilator, and actually on dialysis some. And then she did recover from that, and her kidneys recovered from that. And since then really she’s been pretty healthy. For three years she’s been fairly healthy. But it took a lot for her body to recover, and developmentally she was very delayed. She didn’t walk until she was two and a half, didn’t really start talking until she was almost three, but has made great progress, and as far as we know her brain has come through everything okay.

Mother of Sophia, 4

 

An easier, hopeful place right now
Post-transplant she’s had some very, very serious complications, and they’re complications that are even really outside the norm for the transplant team. When she had PTLD, which is a form of cancer, she ended up needing to go through chemotherapy and oncology which is very unusual: it doesn’t usually get that extreme that quickly…so our life post-transplant is fraught with possible complications; we often joke that there’s a list of possible complications, and her body seems to be taking it as a checklist. But on the other hand, the future is completely unknown, and instead of feeling like the future is filled with the possibility of more infections and not surviving, now we feel like the future is filled with medication improvements and getting stronger and getting further out from transplant and growing and developing and her own body kind of developing its own tolerance for her organs. We were hopeful before, but we live in an easier, more hopeful place right now.

Mother of Meg, 9

 

Feeling that the other shoe will drop
It’s hard to live with the feeling that the other shoe will drop any minute. But on the other hand, I think we’ve lived that way for a really long time, and some of the things that have happened to Meg in the last two years, or year and a half since transplant…how do I put it? As much as they are bad things, and they’re big and they’re scary, they’re identified and they’ve been mostly known complications that we would be looking for, and then unfortunately they happened, but we knew they could happen and then we know what to do about them.

Mother of Meg, 9