Another practical piece of advice is to find washable, absorbent underwear. The underwear that we have now looks like regular boys boxer shorts but has an absorbent liner with waterproof backing. I wash it weekly and it works beautifully.
Mother of Ryan, age 11
She can carry it in her pocket
I got her little caths so that nobody sees – this is very convenient, you can put it in your pocket. It’s called SpeediCath Compact…before we used to carry a bag and the mirror and the caths and they were sixteen inches long – it was not going to work!
She still keeps them at the nurse but she knows how to do it herself and it’s very easy. It’s already lubricated, very sterile, so she cannot make a mistake. She goes at noon to the nurse, drinks a bottle of water, and does the SpeediCath – but she’s independent, she doesn’t even need to go to the nurse. If she goes at noon and she does the SpeediCath in the bathroom, that’s it! She can carry it in her pocket.
Mother of Naomi, age 10
Choosing the right catheter
Dad: The Foster catheter was the regular catheter, and I think that wasn’t well enough lubricated and you have to put gel on, then it can cause irritation, so she was complaining of the pain. But then the doctor changed it to some new Lofric cath with water pocket. It has a water pocket and you don’t have to lubricate it and it’s better.
Jaya: But still my parents have to squeeze it, so I use the regular ones at school.
Dad: Yeah, she uses regular, because the water pocket one is hard to squeeze.
Jaya, age 8, and father
Right into the toilet
When she was an infant we would lay her down on the changing table and cath her that way, right into the diaper. But we decided to try and make it more like normal kids potty-training, and then to smooth the transition later on, we just would sit her on the potty. We had one of the little child seats we put on top, and we would cath her right into the toilet.
And when she went to school, we taught the nurse how to do it that way. Usually in the nurse’s office they have a bed, they can cath horizontally, but they’ve just got a little curtain – other kids can kind of walk in. It allowed her a little bit more privacy to go into the bathroom and just take care of it there…
What we eventually came up with that worked was we would basically have her stick her middle finger into the vaginal opening, sort of like if you were inserting a tampon but just barely, and then she would take the tip of the cath and sort of slide it along her finger and it would basically slide right into the urethra. And then she’d take her finger out of the vagina and just allow the urine to empty then. That has worked for her really well.
The one thing that we discovered is that you want to just have the bare amount of goo on the catheter because if you have a whole lot, it gets your finger really slick and the catheter slips all over, but if you just coat it very lightly then it slips right in and it’s not too much…When we first started doing this technique, she could get it like 25% of the time, and then other times she’d get frustrated and I’d just say, “Okay, well, let me do it this time. You made some good tries.” But within three months of using this technique, she went from doing it like 25% of the time to getting it I would say 75 to 90% of the time. And then by the time we had reached the year mark she was just doing it all on her own, and months went by and she didn’t have a problem.
Mother of Siobhan, age 9
Emergency packs
When you’re starting to do cathing for the first time, it’s really helpful: I had multiple little cath kits that I would keep places. You can put them in clear Ziplocs or you can even get those cute little pencil cases – just put a small tube of KY and a couple caths and some wipes. I would keep one in my car at all times, so if the couple that I had in my purse ran out, I always had an extra in my car. There was an extra pack at school, like an emergency pack, so if they ran out of catheters and didn’t tell me they needed a new box, there was an emergency pack they could rip into…it’s always nice to have those emergency packs made up so you don’t get caught out. I remember one time we got caught in a flooding situation, and I had to actually go into a clinic and be like, “I can’t get home to my catheter supply, can you give me some catheters?” So that’s why I’m sort of obsessive about always having them!
Mother of Siobhan, age 9
Brother of Ryan, age 11
We made up a silly name for them
One of the things that we did – you know, because he was wearing pull-ups – he didn’t like the idea of calling them diapers or pull-ups; he wanted to call them something else, so we made up a silly name for them. We called them fogeys. Fogeypants, we called them! So if we ever referred to it by mistake in front of anybody they would have no idea what we were talking about…It was Henry’s idea. For two years we called them fogeys! You’ve got to have a sense of humor and you have to have some sense of control.
Mother of Henry, age 12
It made it accessible for me
When he was younger it was hard to cath him because he’d squirm; he didn’t want to have it done. So I used to take one of those table top ironing boards and I would wrap little towels between his legs. I took another towel and I strapped his legs down to the ironing board, and I tucked the towel ends underneath the board. As he got a little bit more comfortable with the process and a little more used to it, which probably took a couple months, he stopped squirming. I didn’t have to use the ironing board anymore, he would just lay there. But I found the ironing board worked better at first, just because of the hard surface on the bottom. He couldn’t bend his legs, it made it accessible for me…
He does occasionally wet through at night, so I have the pads that they use in the hospitals on the bed. He’s a little put off by that, but I told him it’s a lot easier to pick that up than to clean your sheets every night.
Mother of Ethan, age 13
How we refer to it
That’s how we refer it to it now, just taking care of yourself, rather than, “Do you need to go to the bathroom? Do you need to cath yourself?” We started that actually when he was in school, instead of, “Do you need to go to the nurse?” or anything like that. “You need to go take care of yourself” worked out pretty well for us.
Mother of Ethan, age 13
So much easier to keep track
I would tell people to keep a notebook – that’s really helped us a lot. I can say, “Well, she had a renal ultrasound a couple years ago and this is what it showed, this is what the doctors initially said about this, and this is when they say we have to come back..” It’s just so much easier to keep track of things. And then you can see, oh, she had a bladder infection this month, she had a bladder infection two months ago…you know, you can see patterns. So that’s what I suggest to people.
I even did it for my other kids too, and when it comes to giving a history, it’s so much easier. It’s just easier to know what’s going on.
Mother of Kayla, age 14