There was one time he got sick because he had too much mucus build-up, so they irrigated but that was really the only thing. It didn’t really set him back at all, it just was a bad day…he’ll get UTI’s now and then. He doesn’t get regular symptoms – he gets irritable and that’s kind of like a tip off. And he might get a little bit more leakage, more mucus, but he doesn’t get any pain or burning, like typical symptoms…usually if he’s irritable and he’s having more leaking then I’ll check a couple of times watching him cath and there’s usually more mucus and then I’ll call the nurse and get a culture. It’s usually an infection.
Mother of Eric, age 8
Using the suprapubic tube
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 …There were times when we were supposed to close the valve and then open it. At first it was always open so it could keep draining and draining and let the bladder rest. And then eventually we closed off the valve and then we’d drain it to see how much we had and to see if he’d start going on his own, which he was, so that was the good thing.
We probably had it for about three months and then he kept getting infections because it’s such a sterile site. At one point they thought he might have pseudomonas*, which I guess is pretty scary, so we did come in. They decided that it was causing more harm than good at that point, because he was peeing on his own. You know, his bladder was still always large but as long as he was going, they were okay with that.
Mother of Patrick, age 2
* A bacterial infection
He would noticeably stain
Most of the problems were when he became active. When he was a baby it really wasn’t any big deal, but as Jared got older, because he could walk and do everything normally, it was harder.* It’s a big joke; my mother-in-law calls my son the Fed-Ex package. We used to have to take the diaper and put it on him, cut the back of another diaper and tape it up so you don’t lose all the filling, and tape it over his stomach…Summer was our worst time. That was a big hurdle, I remember that. I cried a lot. I put him in a bathing suit a lot and put him outside, because you didn’t want to put him in clothes all the time either – he got very hot because he was on the medicine that makes the bladder relax, Ditropan (Oxybutynin). That would make him so hot, it wasn’t even funny! So basically we would try to get his hair cut as short as we could to try to keep him cool and try to keep him where there was water and whatnot. It was a bad situation. But he would leak. He would noticeably stain in the stomach area if he peed, because at this point now he’s active… The problem was that he leaked. And we didn’t know what to do, because we really felt he shouldn’t be in diapers. We upped the medicine, the medicine didn’t quite agree with him, according to sweating and thirst; I remember he’d go through a gallon of milk in two days! So there a lot of health reasons why we didn’t want to up the medicine, but to have it where it was wasn’t fulfilling a need for not leaking through his pants. And then we started saying, “Okay, did we do something wrong now? Here we are cathing him through the stoma and he’s leaking through the penis. Okay, now what?” So now we’re going through another limbo!
We kind of just went with the flow, kept him in diapers, went to the pull-ups – he could pull them down to go to the bathroom, but it was still keeping him dry. Still had to change him, but got the urine out in general. So we didn’t have it exactly the way we wanted it, but that’s what we did.
Mother of Jared, age 6
* Editor’s note: Jared had a vesicostomy. The leaking became more problematic as Jared got more active.
Mother of Isaiah, age 17
Dealing with the pain
The main stress is constipation these days. The cath is okay, but if she gets urine infections that is very stressful because she’s in pain. Lately that is not a problem, because she is on antibiotics…but I mean, I don’t want her to be on antibiotics, so we’ll see. But these days, it’s mainly these two problems, constipation and infection – doing the cath or taking medicine is not a problem, but more these issues even after doing that. Every couple of weeks is a problem…she’ll be fine on medicine, on antibiotics, she’s okay, so we’re okay, but she’ll have another problem. Again, antibiotics, regular follow up and trying to manage, but so far we are struggling…I mean, cath is not a problem. It’s more dealing with all this pain. When there’s the pain, then you have to get medication – no other solution I think.
Father of Jaya, age 8
Not much in terms of leakage
She’s been on Ditropan (Oxybutynin), and between the Ditropan and cathing about every four hours or so, she has had very little issues with leaking. I think maybe three, four times over the course of her life, with the exception of when we got into her cathing herself and she would forget and then she would overflow leak. And then we had a couple of those rapid-fire when she was learning that it’s now her job to remember when to go to the bathroom! But otherwise not much in terms of leakage.
We did have early on fairly frequent urinary tract infections, and she was on prophylactic antibiotics. And we cathed her more frequently because of that, and started doing the midnight catheter to make sure she always had low pressures, because she was some having reflux back up in the kidneys. And doing that cured the reflux and now we have no problems with urinary tract infections.
Father of Siobhan, age 9
Start pounding down the fluids
It is a bit of a struggle to get him to drink more fluids. And I can usually tell from looking at the catheters in the trash when he’s not drinking enough, because he will get the build-up of mucus and a little bit of blood, and then I usually tell him, “You need to start pounding down the fluids, you know, you’re going to come down with an infection, it’s going to be really painful, you’re going to start your getting bladder spasms.” And being able to tell him what it is and him knowing that this is true, I’m not just making it up – he knows and understand and remembers what it feels like. So he’s at a point now where he’s more able to respond to it and be proactive and do it on his own. I’m not standing there, handing him a drink, telling him to drink half of it, “Here, drink this much,” then going back and checking it. He’s pretty good about doing that on his own now.
Mother of Ethan, age 13
Mother of Dylan, age 16
Lag time
His pediatricians were about half an hour from our house so we would get his urine cultured there, and then they would call us up, “I called in the antibiotic,” and dadadada…and then we came here after like a year, with all our history, and the urologist was like, “We don’t have to treat every infection because he has so many from having the stoma.” Then it’s like, oh! So then what we were doing was we had them fax the results here. So then it would be three or four days lag time, and the pediatrician would get all upset and say, “No, you can’t wait that long, he has to start right away, blah blah blah…”
Mother of Alex, age 17
Stopped him right in his tracks
They’re scary – he got really sick with the kidney infections. The UTIs, they weren’t that bad. He would know when he was getting one, you could tell by the smell, we’d go to the pediatrician, here it comes, get the antibiotics, and we were fine. He never really got temperatures when he got urinary tract infections. But those kidney infections? Ooh! Stopped him right in his tracks.
Mother of Alex, age 17