In survival mode
Dad: What did we used to call it when we were in the hospital? We used to say we were in survival mode. It was like flipping a switch.
Mom: You didn’t worry about anything else, other than what you had to do.
Dad: And you didn’t have many choices, except for doing what you needed to do: taking care of your children and each other. Your decisions are few, just to do the right thing.
Mom: I’d be here with Sophia, somebody had to take care of her sister – the rest was just working out the details.
Parents of Sophia, 4
A nice way to keep in touch
We did use CarePages, and getting the messages from that was helpful. That’s a nice way to keep in touch: you don’t need to make near as many phone calls and reiterate what’s going on. Especially when she was so sick, I didn’t really feel like telling how sick she was 10 times a day, so I would tell my mom and my friend, then I could update the CarePage and other people would know how to pray for us and Sophia and keep in touch.
Parents of Sophia, 4
My comfortable is being with my son
I have to be with him at all times, it kind of helps me. I can’t be away because I feel like I don’t have control, and I have to have control of the situation. So when I’m here for eight weeks, I literally am here for eight weeks. I don’t go home, I don’t leave, and that’s how I deal with it. My husband, on the other hand, needs to get out, he needs to go home and shower in his own shower and get one night’s sleep in his bed and he comes back and he’s a new person and is better for it. So I think it’s just what works for you. I think it’s important to step back. It’s important to trust your medical team and know that they’re doing the best for you, and find one or two people that you’re really comfortable with, that you can talk to and break down with and cry with and put out all of your worries to, if that’s what it takes. I think it’s just finding whatever’s comfortable for you.
Mother of Noah, 5
The most overwhelming thing
That was incredibly difficult, going into the regular floor, where it was very busy busy, lots of people, and here I am with this dialysis machine, dialysis nurses coming in…
Our primary nurse taught us, and I felt like I was at Harvard, enrolled in this program that I never wanted to sign up for, and someone’s telling me, “Here’s your class, now take this class!” And not only that, I was completely exhausted – and my husband, too, I shouldn’t just say me, because we were both exhausted. So you have the emotional issues, and then on top of that you have exhaustion, so you’re ready to rip anyone’s head off. [Laughs] Those nurses, God love them, I don’t know how they do it, because that was the most overwhelming thing!
Mother of Lydia, 6
When we need help, we ask for it
I think the first thing I would say is absolutely take every possible kind of support you can get. Reach out to Child Life, reach out to the social workers, reach out to the transplant team. Make sure if you’re the parent who’s with the child in the hospital that you’re not the only one who can do it. Make sure there is somebody you can trade off with: I don’t care if it’s your spouse, or your best friend, or your sister, or your mother, whomever. For me, my partner and I are able to switch, and just the break, just being able to walk away and know she’s safe and well-attended and cared for – mistakes happen. They happen all the time. There’s human error. And there’s also the fact that this is your child. You have one child, one patient that you’re really focusing 100% on, and if you’re there advocating it makes all the difference. But you can’t be that 24 hours a day, 7 days a week, for months in a row.
For us, I think the thing that has really, really helped us is that it’s been going on for so long now that we’re not shy. When we need help, we ask for it. I don’t care if it’s just somebody to come pick up our trash and take it to the dump for us, or somebody to deliver us meals to the house from our church, or people in our community who will come and hang out with Meg for the afternoon while I go for a walk with Liz on a Sunday when there’s no doctors around. You have to ask for help because you can’t do it alone. You just become so intense and so stressed out and so exhausted and so mentally and physically exhausted that you can’t be a good advocate anymore.
So the question always is the balance. How do you take care of yourself enough to be okay, and how do you take care of your child in a way that you really feel proud of?
Mother of Meg, 9
Trying to keep our rules the same here
He was kind of happy that he was staying in the hospital, just because he could get spoiled again here. That’s the only reason he doesn’t want to go home. We have been a really rough time with him, because we’re trying to keep our rules at home the same here: the TV goes off when somebody’s talking to you, the TV goes off when you’re eating, and you don’t get it again until you’re done eating or until we’re happy with you finishing your meal. And his meals have been really poor, it’s been taking hours for him to eat, it’s getting ridiculous. He’s just doing it because we’re in the hospital and he thinks he can get away with it!
[Later] With him being hospitalized so much and spoiled so much, I think him listening to us as parents was really hard, because he didn’t just have his parents to raise him: he had a hospital, he had a staff full of nurses to turn to! It’s kind of difficult for him to just pay attention to us, because he wouldn’t ask just us anymore, he would ask other people.
Mother of Austin, 9
Tag, you’re it
This time when we did the hospital, my husband and I literally did, “Tag, you’re it,” every other day and we switched, so she was never home alone and I was home 50% of the time. My husband really made some huge sacrifices with work and did his part up at the hospital. And honestly, it was so much better for everybody to do that, to not feel like mom has to take care of the sick kid.
Mother of Eva, 13
A home away from home
We’ve always tried to make the hospital a social setting for her, so whether she’s feeling well or whether she’s feeling sick, we try to make it kind of a home away from home. I don’t know how often you get to roam around the transplant floor, but Laura has painted every window on that floor! Even when she’s in there and sick, we try to find things that she enjoys doing so that there’s a comfort level there. And we make it a point to come back and see people when she is well, because I think it’s hard on the staff if the only time they see these kids they’re inpatient!
Mother of Laura, 14
It’s funny how much stuff you have to do, but after doing it for so many days, you get really bored. All the games and coloring and painting – we made beads, we made key chains for everyone that said thank you on them. We made cards, because my mother-in-law had gone online and asked people, anybody, just to send her cards, just to give her mail every day. Let me tell you, she got mail every day!
Mother of Alanna, 15
It kept her going
Thank God for the play lady, that’s what we called her. But she was great, even to watch her with the other kids, not just Alanna. She set up a routine for Alanna every day, like, “You’re not sitting in bed all day long. That’s not what you’re going to do. We’re going to have a schedule: you’re going to get up, you’re going to brush your teeth…” You know, like if you were at home! They did that.
And she did have tutoring while she was in the hospital too. So even though she had to stay back (I know she hated that), at least it gave her something to do. I think it was two hours a day, it wasn’t a big long time, but at least it kept her going.
Mother of Alanna, 15
Being in a hospital for an extended period of time, you kind of go into a different mode. The hardest part about being there is staying there. Time ceases to run normally; the hospital works on a 24-hour clock. You try to sleep in the room with your child, but it doesn’t matter because someone is there every half hour or every hour. Suzie had trouble sleeping. People drift off to sleep at 5 o’clock in the morning, and then at 6:30 have to be the Energizer Bunny while interns are doing their rounds. Sleep is a real problem