When she was still in the hospital, they had a catheter in her from the surgery they kept in for a little while, but when they took that out, she was able to go to the bathroom on her own. She couldn’t believe how much urine was able to pass! And then when she used the catheter, a lot came out, and for a few days a lot was coming out, then it seemed to stop. So we’re hoping that we’re going to find out today that she can stop. I had her stop using the catheter because it didn’t seem like anything was coming out. I think it may have solved the problem!
Mother of Gabriella, age 12
It seemed to happen so fast
Gabriella: One Saturday morning when I woke up I was about to use my catheter, but it really hurt when I was in the bathroom and then I decided I just couldn’t do it because of the pain. So then I went up to my mom’s bed and I just lied down, and I was really in a lot of pain. My brother and my dad left the house to go do something, and my mom was wondering where I was because I told her that my side really hurt, and so she came upstairs. Usually I watch TV on Saturday mornings and she noticed that the TV wasn’t on, so she knew something was wrong!
Mom: And I could hear you moaning. I was just below down her in the office and I could hear her kind of moaning. I was like, “Where are you? I can hear you, but where are you?” And that’s when I came up.
Gabriella: She called my regular doctor, but on the weekends they’re not there so we had to go to the one in…
Mom: It was in another town. They have one that’s on call on Saturdays for a few hours, for emergency cases or whatever. So we went there and they kind of felt around and it was tender to the touch so he sent us across the street – they’re across from a hospital. And they did an ultrasound, they did lab work, and then they did an MRI because they found a mass when they did the ultrasound. And they got a transport to Children’s Hospital and by 7:20 that night, she was being wheeled in to the OR. It seemed to happen so fast. It just kept progressing, it was crazy! It went quick and then all of a sudden, she was in the OR and I was sitting there in the waiting room, like, what just happened? I just tried to take it all in, impatiently waiting for the doctor to come in and tell me what was going on.
Gabriella, age 12, and mother
Another scary time
Freshman year, ninth grade, she had a blockage. She had emergency surgery. It was another one of these things, “What’s happening??” She was throwing up green bile and it was awful! They didn’t discover it for four days – they kept thinking she was just impacted. And there was a great doctor, I can’t remember her name, who said, “I don’t think she’s impacted. I think we should have a CT scan here.” They found a blockage and they operated that day. So that was another scary time, and that was just a couple years ago.
Mother of Elizabeth, age 16
She was in the hospital for almost three weeks at birth, then we went home. We were home just about a week with a visiting nurse and she noticed a rash. And I said, “Yeah, she seems kind of sleepy…” It was cellulitis. She could’ve died. It was like midnight, they had to go in and put a CVL to get a line into her. That was very serious, it could’ve gone septic.
The first two, three years, were pretty hard – you know, just different things…we were about to have an appointment with the doctor very early one morning…I was changing her diaper, and all of a sudden she was gushing blood! Or blood in urine, but it was mostly blood – so it was like, “Oh God, oh God!” I called the doctor and said, “Listen, there’s bleeding!!” “Oh, it’s just scar tissue. Don’t worry, it’s expected.” I said, “It would’ve been nice if somebody told me!” It was one of those things where your heart goes like this, then it comes down, your heart goes like that, it comes down… it’s always like the gopher head comes up, you put one down, something else comes up.
Mother of Elizabeth, age 16
Alexa, like she said, is pretty independent. In the beginning, it was a little hairy – she had a little bit of blood on a couple of the tips of the catheters, so she was very worried about that and she wanted me to email Angela to make sure it was okay. Even though me as the nurse said it’s fine, it’s normal, she still wanted to check with somebody else from the hospital. So I had a conversation with Angela.
Mother of Alexa, age 16
We found something else we didn’t know she had
Mom: In the meantime, she was diagnosed with endometriosis and she had surgery in March for that. That, in some areas, I think helped also, because it took away some of the pain she thought might be related to not going to the bathroom. So we have had an interesting year. And then actually with all of what we went through with uro, that was really helpful to get the endometriosis diagnosed.
Val: Because they saw stuff on my ovaries and uterus through the ultrasound.
Mom: So it all just kind of worked out, and we found out something else we didn’t know she had that was able to be corrected.
Val, age 19, and mother
Over the course of a weekend she was paralyzed from the waist down
Leah was up in Vermont for the weekend at her Dad’s and he said that she wasn’t feeling well but he didn’t think anything of it. And then she basically started to say that she couldn’t walk, that her legs didn’t work. Over the course of a weekend she was paralyzed from the waist down…that was just the start of it. Then getting to the emergency room up there and we were there for two days when they did the MRI and realized what the problem was.* Then we came down here because I live down here and it just made more sense.
The first two days are obviously totally scary and hectic and super, super crazy. When we got down here and were admitted into the Neurology Unit, her roommate had the same thing and he hadn’t spoken for two weeks. So once we got here I was like, “Oh, it doesn’t matter. She can talk – her brain hadn’t really been affected.” It put things in perspective. So after that point it was just like finding out what the next step to take was and what are we going to do and is she getting better or what.
They treated it with Plasma Floresis, so they did five treatments of that, infusing synthetic plasma to try to get rid of the antibodies that were attacking her. And after the first treatment she could wiggle her toes. So it was a real fast recovery.
Her bladder is the last thing still lingering, that’s the issue. She pees herself constantly, all day long, and has over the past month had two urinary tract infections. So our next appointment is with urodynamics to try to see where she is at with her bladder. And they did say that it usually takes longer to recover bladder control.
Mother of Leah, age 4
* Editor’s Note: Leah had ADEM, acute disseminated encephalomyelitis
Cathing through the stoma
For the first year, or I’d say ten months, he was fine. He did great with it, but then he started having issues about ten months after the surgery. He had accidently created a false passage, and that was hard because he had to go in for a minor procedure: the doctor had to go back in, put the cath in surgically, and let the false passage heal. That was a long road because he had a hard time for a long time after that, cathing through the stoma. If we couldn’t get it in, we would run to the doctor’s office and the nurses would put it in for him. It was happening a lot, I’d say every other week or so we were running in, for months. It was hard.
It affected everybody. He missed a lot of school. He managed to keep up with his grades but on every report card it said he would be doing better if it weren’t for the absences. He worked really hard at keeping a solid B average but it was difficult on his life. It was difficult on ours because I would miss days of work and I don’t work full time so I would miss a whole day’s pay. That all worked out, but I would have to call out of work, drive him in, and of course the co-pay, so it was getting pricy. He went in for that procedure more than once.
Mother of Dylan, age 16
We don’t panic anymore
For the most part, he’s been so good at getting it in! Even days when he’s having trouble getting it in at first, he will wait a few hours and he is much more at ease with getting it in and trying again. I think he was afraid before, because every time we would go in to the doctors they would just put it in so easily! I think he was just being overly cautious with himself since he had made that false passage and he didn’t want to do it again. So if he couldn’t get it in, if it was stuck at all, he would panic and not want to try it, or not want to have me try it. He would feel more comfortable with the nurse doing it. Now he works a little bit more getting the catheter in on his own so he doesn’t have to. There have been a couple times where he’s said, “I’m having trouble,” but we don’t panic anymore. He relaxes, he follows the doctors’ advice, maybe he would take some Ibuprofen because sometimes it’s inflamed, and when he tries a few hours later, it usually goes in.
Mother of Dylan, age 16