Q: How long has your sibling had a feeding tube?
A: I want to say a little less than 4 years. [Close, it had been 4 years and 4 months.]
Q: What can you tell me about why she has a feeding tube?
A: Because when she was little she wouldn’t eat like she was supposed to so the doctors gave her the feeding tube through her nose and then that kept coming out. Then they gave her a different tube and a couple other tubes after that. Now she has a glow-in-the-dark one. She threw up all her food after she ate. [Raya had chronic vomiting of unknown etiology that has now resolved. She is currently diagnosed with dysphagia, GERD, gastroparesis, mild developmental delays, multiple food allergies and intolerances, and 18p11.31 duplication.]
Q: Why does she still have a feeding tube?
A: There’s a lot of things she can’t have and there’s only certain things that she can eat. She won’t exactly eat all the stuff she’s allowed to eat and she doesn’t eat enough.
Q: What can you tell me about how the feeding tube works/helps?
A: The feeding tube gives her food and helps her not be hungry. Without it she’d have to drink the formula and probably wouldn’t really accept that.
Q: How do you help with the feeding tube, pumps, feeding?
A: Sometimes in the morning, I help get the pump ready by getting the bag and turning on the pump. When her balloon comes out, I find the emergency kit and put it back in. If her pump beeps, I fix the problem and get it going again.
Q: How did you learn to do everything you know how to do with her tube and pump?
A: [Mom] taught me and I learned by watching and asking questions.
Q: How does knowing how to do all those things make you feel?
A: I feel unafraid and relaxed because if her tube comes out I know what to do. If I didn’t know how to take care of her, I would be worried and scared.
Q: What kinds of things do you like to do with your sibling?
A: Dance, talk about things, let her sleep in my bed, play games, let her play with my jump rope, teach her things.
Q: Do you think the feeding tube gets in the way of the activity or makes it hard for her to do things?
A: No. I mean, swimming, if she’s plugged in. We have to unplug her and then plug her back in when she’s done, but I don’t really think it gets in the way of anything.
Q: What’s it like when you’re out with your sibling and people see her tube feeding?
A: Sometimes at school I’m talking about her and they don’t know who I’m talking about so I give them a brief summary about why she got her tube. My friends sometimes wonder what the tube is and why she has it, but mostly they just think she’s cute.
Q: How does that make you feel when people are curious about her tube?
A: If I can tell they’re curious, I go up to them and tell them about it. I can usually tell if they’re staring at her. If they’re staring with a disgusting face, I feel like doing something about it and telling them not to stare at her because she’s just a normal kid. If they’re just looking at her in a normal way then I’ll be nice about it and just answer their questions, if they have any. And if I can answer it.
Q: Do you remember how you felt when your sibling first got her feeding tube?
A: I was sort of curious and eager to learn about it and sort of impressed by her feeding tube. She looked a little different, but she was still really cute.
Q: Do your mom and dad ever worry about the tube (seem worried or struggle with the tube)? Do you think it is hard for your parents to have a kid with a feeding tube?
Q: What’s one thing you don’t like you don’t like about the tube?
A: Sometimes if the pump beeps a zillion times and we can’t figure out why, it gets on my nerves a little.
Q: What’s one thing you like about your sibling’s feeding tube?
A: I like that she’s happy about it. I also like that it keeps her healthy. I also really liked giving a presentation at school about feeding tubes.