Things that help
Walter: I love to read, that’s my favorite thing to do.
Dad: But he doesn’t read in the hospital for the most part, never has. And he loves to read, loves to read!
Walter: I just don’t like to do it here! Seeing my class always helps, on Skype…I got an iPod touch on Thursday, coming up here, and that is really cool. I usually use my DS.
Walter, 11 and father
Don’t stay cooped up in your room
Find something interesting to do! And don’t be afraid of wearing a mask, because in the beginning I was afraid of wearing a mask out in the hallway to go, like, to the activity room, but if you wear it, you’ll be fine. I would just be like, “Ehh, I don’t want to go. Everybody’s going to see the mask.” I was embarrassed, but then I got used to it.
So go in the activity room. Just don’t stay cooped up in your room. You’re going to be bored, you’re going to be mad. You have to stay in your room for, like, the first week, but you kind of don’t notice because you’re just out of it the whole time, and you kind of just sleep most of it. But when you can go out in the hallway and take walks, just take as much advantage as you can.
Eva, 13
Movies and music
If you’re in the hospital, I found that movies are the best. Movies and music will get you through a day.
[Later]
Staying in the hospital is not a huge deal anymore – but then again I haven’t had a big thing happen to me for a while.
I used to really hate it. You’d be too sick to really be awake…but the people were nice, all that stuff.
David, 15
I was more worried about everyone around me
When I went into heart failure, I stayed in the hospital the rest of the time. It was strange at first, but I got used to it. I’m not a pessimistic person, so not once did I feel bad for myself. I just looked around – there were so many kids in worse condition than me. And I watched other kids pass away.
It was just weird, not being home, you know? Not being in school. And all my friends worried about me. [Later] I was just worried about getting better. I was just raised like that: sitting there feeling bad about yourself doesn’t make anything better, you know what I mean? It just makes everything worse, because you’re sitting there worrying about stuff. I was more worried about everyone around me.
Anthony, 20
Spending the time with family
I played Xbox a lot, pulled pranks on the nurses, and just spent the time with my family. My mother was always there for me, and my dad. My dad actually lives nearby, so he’d come by and find me all the time. My family helped me through it a lot as well.
Anthony, 20
Child Life
When I was older – like, young adult, probably around 16 or 17 – and I was inpatient, I would decorate frames, watch movies…I distinctly remember the Child Life specialist setting up a group to watch a movie in the playroom area, which was awesome. When I was younger, around 7 or 8, I was in the hospital and I just remember playing Play-Doh for hours and hours and hours with the Child Life specialists.
Samantha, 22
Documenting changes
I have to say the coolest thing that I did, that I don’t know of anybody else doing, is that I got pictures. I got pictures of my old lungs, and I got pictures of my new lungs. I had my dad take a picture of me three times a day with his digital camera every day I was in the hospital, because I kind of don’t remember the first six days. I know I was up and I remember doing certain things, but you are on a high dose of pain medicine. And I love having the pictures; I love being able to show that to people. I’m a picture person, and that’s the best because you can see how you go; from day to day it changes. I think that was just really neat. I wish I had done a video documentary, but pictures were just easier and quicker. I think that’s just really interesting for people to get.
Anonymous