Waiting for my child’s Transplant

transplant key


 

transplant_liver_green We were going to get the call sooner rather than later
Noah probably waited for three weeks. I was surprised at how quick it was! They had said it could be months or it could be longer. However, Noah was deteriorating, he was getting sicker with every appointment we had, so he kept moving up and up on the list. But it’s almost surreal when the call comes in.

Like, five days after he was listed, we got a call in the middle of the night saying there was a possibility for a transplant for Noah. He was second in line, there was another child ahead of him, and if that child failed for some reason, Noah would have been next. It didn’t happen that day – we didn’t have to go in –
but that’s when we realized that we were going to get the call sooner rather than later.

Mother of Noah, 5

 

transplant_liver_green Wow, this could happen
It happened so quickly. You know, when you first go on a list you’re kind of low priority, and as time goes on, things happen, they list you higher and higher if they can… So after 30 days, we get listed at one level, and then after a couple weeks we get elevated. We got a phone call and I remember Katie of the transplant team, saying, “Hey, we just upped your status from X to Y,” whatever it was, and she’s like, “Be prepared.” And just the way she said it, I’m like, “Wow, this could happen.” And the following Sunday, I’m sitting there reading the newspaper Sunday morning, we got a call at eight in the morning from Dr. Jonas, and it was like, game on. It was probably the most stress I’ve probably ever had.

Father of Walter, 11

 

transplant_lung_blue Feeling like your life is on hold
The hardest part was sitting around waiting to find out when the transplant is going to happen, feeling like your life is completely on hold. You know, we couldn’t travel more than a certain amount of distance away from Children’s Hospital. So that I think was the hardest – outside of the actual surgery and that whole piece, waiting for the transplant is very hard.

Mother of RJ, 12

 

transplant_heart_red In complete denial
Honestly, I think we were in complete denial. When I look back, we were so not ready when the phone call came. I kept putting things off…people had said, “You can do Make-a-Wish,” and I would say, “She’s not that sick. She’s fine.” Because she went to school! Which in my mind meant, in many ways she was okay. So we had no bags packed. She and I had talked about starting the Care Pages thing, but I was like, “That’s, like, really sick kids. So when you go in the hospital and are put on Milrinone*, that’s when we’ll start that.” You know, that was my thought process, and I think that was probably hers too: that it’s coming but it’s going to be at the end of the year… Like, complete unreality. Very ill-prepared.

Mother of Eva, 13

 

transplant_heart_red I have no control!
I know Eva thought about not getting called in time. I think everyone in the whole family thought about it. My husband and I would talk about it sometimes…it would be one of those late at night things, like I couldn’t say it in the light. The lights would be off, we’d be in bed and it would be like, “What if, what if…what if she doesn’t make it? What are we going to do?”
We have this really strong faith, and I’d just pray about it and be like, “All right, I have no control!” I’m a really controlling person, but you just throw up your hands: it’s like, I just have to trust. Whatever’s going to happen is going to happen, I can’t do anything, I can’t pray that someone else’s child dies so that my kid lives…my mom put it beautifully, and she said, “Listen, something bad is going to happen anyway to somebody and you have no control over that, and what you pray is that a family will have an opportunity to make a decision, and when they are given that choice that they’ll say, “Yeah, let’s go ahead and donate.”

Mother of Eva, 13

 

transplant_lung_blue She just wasn’t ready
We did get a call in the interim. It came in the middle of the night, and it really disrupted her and her sister; they were both not really ready or capable. I don’t know whether it was really a viable opportunity for us, but emotionally she just wasn’t ready…I felt like she had thrown in the towel, and I just knew she couldn’t go into surgery with that attitude, because it was going to be a fight to come back. So we declined one opportunity.
But by Christmas, she started making a list of ice skates that she wanted, and skis that she wanted, and all these things that she wanted to get back to being a regular kid, and I knew she was ready at that point…all she wanted for Christmas that year was her breath back.

Mother of Laura, 14

 

transplant_heart_red When other families are called first
Alanna was top of the list, but it doesn’t matter: if it’s a heart and it doesn’t fit her makeup, it’s got to go to somebody else! … We were told after she got her transplant that a few offers did come in, and they rejected them for her. I’m so glad they didn’t tell us, because I know a couple of the others families thought it was time and then it wasn’t. The nurse said, “I made sure that they didn’t tell you. You guys waited a long time, and Alanna was really sick. I didn’t want to give you any false hope.”

Mother of Alanna, 15

 

transplant_kidney_yellow Are you praying I get a kidney?
Everyday Isaiah would say, “Oh, it’s not going to happen, it’s not going to happen…” He was starting to get back into that negative mode, I call it. And I said, “Isaiah, it’s only been a couple weeks!” So that’s why I got him the calendar, and I said, “Okay, so every day, just scratch off a day. Don’t think about it, just scratch off a day.” And then one day he’s like, “Mommy are you praying I get a kidney?” And I was like, “Isaiah, are you praying that you get a kidney?”

Mother of Isaiah, 17

 

transplant_lung_blue I just wanted it over with
Jess: 116 days I waited to get my lungs.

Mom: We got so we didn’t watch the news, because we’d hear pedestrian killed, and we’re like, “Oh! I wonder where they’re from.” I remember there was one: “Woman dies in fire,”

Jess looks at me…

Jess: It kind of gets like insanity!

Mom: So we finally made a pact that we were not going to watch the news!

Jess, 18, and mother