We got an offer of organs
Mom: It was about 4 in the morning. Dad was in a sleep room, I was in the ICU with Sophia…I think the nurse had come in to do some stuff with Sophia, take vital signs and change her diaper and stuff, and I got up to help. Her phone rang, and she just said, “No, she’s not having any fevers,” and answered a couple of questions, and then she handed the phone to me and said, “Your doctor wants to talk to you.” And I’m not even sure, if I thought, like, “Oh, we got a call!” or if I was just like, “Oh, okay,” not even thinking. And I said hello, and he said, “We got an offer for organs for Sophia,” and I just was like, “Oh-okay. What do we do now?!” And I was shaking, and your first thought is you’re so excited because your daughter has a chance at life now, and then my second thought was about the donor family – they’re losing a child. So I think that was really hard, because it was like, man, we have a chance, and they don’t have their chance anymore. And then he just said, “Well, it will take a little time before everything gets coordinated,” and thought that maybe she would go to the OR between 11 and 12 noon. It was 4 am, so that was 7, 8 hours away, till she would even go to the OR. And I knew that there are things that happen too – you know, sometimes they find out the organs aren’t viable and you don’t even get to go. So it was like, “Okay, here’s our chance. Hopefully nothing falls through.” I got off the phone and I called over to the sleep room and told Dad that we got this call. He was like, “What should I do? Should I come over?” And I was like, “Well, nothing’s really going to happen until later this morning…”

Dad: But I came over then. You can’t go back to sleep!

Parents of Sophia, 4

 

Signing the consent
Mom: Until you go through it, you don’t really have any idea about the stress of it, I don’t think! It was definitely a relief when we got the call and she went to the OR. Even signing for her to go to the OR, they were going over all these complications and possible outcomes of even death, and I was like, “You know what, I don’t even care! If we don’t do it, she’s going to die, so we might as well have her die trying.”

[Later]
Dad: Boy, you just feel like you’re signing her life away, although you know it’s her only chance. They go through everything. It’s like a 12 hour surgery. When you send her back into the surgery room, you’re saying goodbye to her and you just feel like it could be the last time you’re going to see her alive. You’re hopeful, but yet you’re realistic that this is just a long shot – I mean, even the doctors are saying it is!

Mom: She was very sick at that point…I know we had asked them, probably earlier that week, “How much time do we even have to get a call for transplant?” And they said, “You know, maybe days or weeks, but not months.”

Dad: That’s right, he did say that. They thought this was it, we were running out of time.

Parents of Sophia, 4

 

In the ICU
Mom: We saw her about midnight that night in the ICU. She had tubes everywhere, but she wasn’t puffy, and her coloring was really weird because her liver was working! A lot of the bilirubin had come out of her blood, but it was still in her skin, and she was still pale from surgery. Before surgery she was bright yellow. I mean, her eyes were yellow, her skin was very yellow, she looked like a Dorito, yellow-orange. Then after surgery she was kind of this gray-yellow color, almost green even. It was a weird color. And the tubes – I was like, “Oh my word!” They had so many IVs and big lines and drains and everything in her. And then her ostomy. They keep an ostomy so they can biopsy, and you see some other child’s bowel that has saved your daughter’s life sticking out there, and it’s all nice and pink. We were just, like, “Wow!”

Parents of Sophia, 4

 

This is so not going to happen
Mom: We actually had a possibility of a transplant two days earlier, so we had come in for our first call, had all her blood work…

Meg: And I got the medicine and stuff.

Mom: Everything was going, we thought that it would happen, but the organs were too damaged, and so it didn’t. So then we went home and we thought, “Oh my gosh, what if we have to wait for another four months?” Because she was on huge, huge, huge, powerful IV antibiotics, just continuous, until transplant because no one wanted to risk taking her off. We all knew there were a lot of risks out there, so every day that went by felt like a loaded gun a little bit. So two days later, by coincidence, really truly by coincidence, we got a call saying, “Well, do you want to try again?” and we were like, “Really, are you serious?” And we came in, had labs, and then it was, “Oh we’ll know by 10,” and then it was, “Oh, we’ll know by midnight,” and then it was, “Oh, we’ll know by 2 am.” And then it gets to the next morning and we still didn’t know, and I was like, “This is so not going to happen!” And then they wheeled her off, and lo and behold she had a transplant! I didn’t actually believe it would happen until right up to the last minute.

Meg, 9, and mother