She can cath, that’s fine; it’s remembering to. I’d say the past couple of weeks I stopped asking if she’d cathed because it’s so easy. They’re all there, in the bathroom. And I all of a sudden noticed, “You haven’t been cathing!” “Oh, yeah, yeah, yeah, yeah. I did it like once last week or something.” Because she’s not sick, she hasn’t had any infections or anything…but it’s still bad!
Mother of Elizabeth, age 16
It’s no big deal anymore
With this procedure he actually does both – he urinates a couple times a day and uses a catheter a couple times a day. And he doesn’t have discomfort when he goes because there is no increased pressure because he’s empting periodically throughout the day. When he was urinating he was only going enough to be comfortable but not emptying, so the urine just kept building and building.
In the morning, I think around 10 o’clock, he caths. He kind of just feels like he has to go. And he goes after school when he gets home. And during the day, sometimes he says there are other times that he just feels like he needs to use it one more time, and he’ll just go back in. He feels like he needs to go but he doesn’t think he could just urinate and go, so he uses the catheter. For him he said it doesn’t hurt and it doesn’t matter. It’s no big deal anymore.
Mother of Robert, age 16
He doesn’t want the reminder
His schedule is every three hours. So when he wakes up he caths and irrigates, and before bed he caths and also irrigates. I think at school it’s pretty routine, and at home he’s not as compliant! He’ll do it, but he’ll be like, “OKAY!” Like, he needs the reminder, but he doesn’t want the reminder.
Some days are better than others. I think usually if he’s tired then the reminder doesn’t work so well…We do have a watch and that hasn’t been great because he’ll take it off. I think maybe with another kid that doesn’t mind having a watch on that might work better.
Mother of Eric, age 8
Interrupting play
It’s most stressful when it’s summer and we are having a barbeque and all the kids are playing volleyball and it’s like, “Manny, it’s time!” And Manny doesn’t want to stop. And it’s tough remembering three hours went by. Three hours goes quick when you’re having fun and you feel like you just did it! And sometimes he will say that he’s done it and he hasn’t. I can tell because when you’re getting ready to cath again after three hours have passed, you can’t get the catheter in. So he then has to urinate some. And that’s not good. We want to stick to the cathing, because it’s no good, it’s all this urine that remains in you.
Mother of Manny, age 10
She definitely doesn’t handle it completely independently. If I don’t remind her to go do a cath, she’s not going to. She will run to the bathroom to go to the bathroom, which again she would never do before, so it’s a step in the right direction. But often times she’s a little bit late and she will have a little bit of wet and need to go change. So it’s definitely not completely self-sufficient, but it’s not something that we sit and talk about a lot. It’s kind of like my diabetes – it’s kind of just there. So when she needs to do a cath I just say, “Meghan, cath.” Or if we’re out I just hand her my bag. But even when she’s at home, we have friends over, whatever, we just say, “Meghan, cath,” or point to the bathroom where all the catheter stuff is.
Mother of Meghan, age 8
Back up options
She caths first thing in the morning or right before school. Well, she always caths right before school, so sometimes it’s twice in the morning, depending on how her bladder feels when she wakes up. Then she goes to the nurse’s office at midday and she caths herself – but she goes down there so that if she gets in trouble the nurse is there to bail her out, although as far as I know that hasn’t happened yet this year. Then as soon as she gets home from school she caths. If she has an after school activity, like Girl Scouts, she goes back to the nurse’s office and does it again in the nurse’s office.
We actually have a request for a sleepover with one of her friends, and we’re trying to sort out how we want to do that. And I think one of the things we are looking at is having the sleep-out occur here first, so there’s back up and bail out options. And then maybe having her go over to a friend’s house for a sleepover.
Father of Siobhan, age 9
There’s a reason behind this
I think she gets frustrated sometimes because it’s on a time basis, so that I’ll say, “Siobhan, it’s been four hours. You need to go use the bathroom,” and she’s into something and she doesn’t want to stop – whereas she sees other people, they can kind of decide on their own: “Oh, I’m going to hold it,” or “I don’t have to go that bad now.” So sometimes I think she gets frustrated: “Oh, I’ve got to do this every four hours, and it’s more of a pain for me.”
Usually I just approach that logically with her. I say, “Yeah, I know it is a pain, I know you don’t want to do it,” but she knows she doesn’t hear her body’s signals as well, so that she can feel when her bladder is really distended, but it can be very full and she won’t feel it. So we make sure she understands that we’re emptying it out to prevent infection, to prevent any other reflux from happening, and stuff like that… it’s more just giving her the reminders that there’s a reason behind needing to do this and what it is.
Mother of Siobhan, age 9
Mother of Henry, age 12
All those things would factor in
At that point he was doing it about every four to five hours – in the morning when he got up, and then a time that we picked during school that wouldn’t interrupt his classes. So I would say, play it on the earlier side if need be, not letting him wait more than four and a half hours, but obviously you’d have to look to see if they had a snack time, or if he had lunch, or if he had gym – all those things would factor into when he needed to take care of himself… I think he’s pretty much worked it into his daily routine. He doesn’t let it affect stuff that he needs to get done. If he knows that there’s going to be an all-day event where there’s a possibility that he may not be able to get to a bathroom in time, he will wear a pull-up so that he will avoid the embarrassment and not have to worry about leaking into his pants. So he’s able to plan ahead, knowing what’s coming up. He can plan out, “I got to do it now, even though I just did it. I’ll do it now and get it out of the way because I may not be able to get to a bathroom, I may not be able to do it for three or four hours if something comes up.”
Mother of Ethan, age 13
She’s great about that
She’s great about that kind of stuff. Sometimes she’ll say to me, “I just cathed myself,” and then other times she’ll say, “Do you think I should cath myself before we go?” and I’ll say, “When did you cath yourself?” and she’ll say, “An hour ago,” and I say, “Kayla, you’re not going to need to go.” But she has a bag that she just takes with her wherever she goes. We actually had dinner around six last night and then popped over to see a couple friends of ours and took her with us, only because they have air conditioning and we don’t and it was ninety degrees! So she brought her bag with her and I noticed that she took off and went to the bathroom at their house. So she knows if we’re going to be anywhere for any length of time to just grab her bag and try to always keep that packed so she can just use it as she needs it.
Mother of Kayla, age 14