We sat down in the hospital, with nurses, with doctors, to try to cath Jared to get the urine out correctly. For the lack of a better explanation, they made it sound like Jared had a little twist in his urethra. I couldn’t cath him (granted, I was very nervous at the time), the nurse couldn’t cath him, one of the doctors couldn’t cath him, the other doctor cathed him only after probably a good five minutes, because of the way that Jared’s flap was. They didn’t want to completely hurt his flap going in, but if it relaxed enough and you got in, it was a timing issue. So anyway, he got lucky. The regular cathing really wasn’t a possibility – it wasn’t something that we could do.
Mother of Jared, age 6
Something wasn’t quite catching
When he was born, he did urinate, but then his bladder was still really full. They ran some tests and saw that his bladder could hold way, way more – I think it was 280 cc’s, and a baby normally could only hold, like, 30 ccs. It was huge. So we went for more testing and they were going to send us home with intermittent cath, but actually we tried to do it at the hospital and something wasn’t quite catching when we were doing it, so we decided to go with the suprapubic tube after he was like a week or so old.
It’s just a small tube inserted in there so it wasn’t too bad. And actually we were relieved to get the suprapubic tube because then we didn’t have to cath him, which was really hard. So it was that suprapubic tube right into his bladder, and then we just drained him out from that tube, so that was something that was pretty easy to do.
Mother of Patrick, age 2
Very uncomfortable
We started thinking about catheterization at age 10 and he refused. It was the only way to keep him dry. We tried again at age 11 and he refused, and finally at age 12 ½ he accepted but was scared. He did not like it at all. I think the idea of inserting an object through the penis was strange for my husband and my sons. It was very uncomfortable.
Mother of Peter, age 13
Mother of Robert, age 16
Not the route I wanted to take
Because Kristin was not potty-trained and now being over three years old, they recommended using a catheter to extract the excessive urine. One thing that the urologist did note was that physically or medically there was no reason for Kristin to not be able to urinate. I was extremely frustrated and continue to contact the urologist and her pediatrician for a fix. Her bladder was so stretched out now from holding it and she was going once every 30 hours or so. I wanted someone to tell me what to do to help my child.
The next visit I had a heart-to-heart talk with the urologist and he said just continue to place her on the toilet. But in the meantime he suggested we use the catheter to relieve her from her discomfort. This was a disaster. She was so scared and cried so hard. I was a wreck trying to place it in correctly and couldn’t do it. My husband tried to help but he got so frustrated and starting yelling at Kristin for not staying still. That was it. I knew this was not the route I wanted to take.
Mother of Kristin, age 4
This isn’t going well
At the first urodynamics test, I think she was emptying her bladder 20%: it just wasn’t emptying. That’s when they started giving her the Ditropan (Oxybutynin), some medication to stop her bladder, and I was doing catheters at home. It really only lasted a week because she hated it. You couldn’t force the catheter up her. So I called and said this isn’t going well. The doctor said, “Okay, we’ll stop the medication, just monitor how much she is peeing.” He did some other tests like ultrasounds and they’ve just sort of been keeping an eye on it. Now this has started, she has actually gotten worse as far as wetting herself over the past month, but hasn’t had any UTI’s.
If we started cathing again, I think right now that would be easier. It was a year ago and she was just a little too young. Now I think she would understand more why I have to do it.
Mother of Leah, age 4
It just got too uncomfortable
I think when he became a little more aware of his private area and the sensitivity that it can have…it wasn’t right away, it was probably when he was about eight years old that he started to be a little more devious about it and not so willing to do it. He had always been – you know, you always had to tell him, “Yep, you got to go do this.” It wasn’t something he’d be all excited about, “I’ve got to go take care of this!” He never had a sensation that his bladder was full. He doesn’t really know what that feels like, because he’s always felt it. It’s not anything unusual for him, so he could never comprehend that. “Is your bladder full?” “I don’t know.” I would be able to look at him and tell, “Yes, your bladder is full. You need to go in the bathroom.” And it would become an argument. He would disagree with me – “No, it’s not, I’m fine!”
But I would say at an age transition when he was going through a growth spurt, it just got to a point where it just got too uncomfortable.
Mother of Ethan, age 13
How am I going to do this?
My goal was when he was in first grade to get him dry, so the kids wouldn’t be mean and stuff. And we tried cathing, we tried it for a week. And it was difficult. He didn’t like it, I had a hard time doing it – because as a family, we were always going here, going there, doing this, doing that and I was finding like, okay, well, I’m in the car, how am I going to wash my hands? Or if we’re at the movie theatre, or if one of the kids was at a party at another house, or even at the bowling alley, how am I going to do this? It was a process, but after two weeks it was very overwhelming and we just said forget it, we’ll go back to the diaper for a little while.
Mother of Alex, age 17