Complications after surgery

self-cathing key


 

blue_sc_func After the surgery, Alexa couldn’t void normally. We talked to the urologist and he said, you know, with the surgery and swelling, it would probably come back…but Alexa didn’t really tell me everything until recently, that it was getting worse and things like that. And that’s when I said, “Okay, well, let’s go to your pediatrician and see.” Because we kind of got a clean bill of health two years ago from Urology, saying that her kidney was growing back again and everything looked well. Her urine culture that we did at the pediatrician was negative, and he said, “Why don’t you go back to Children’s?” And so that’s when we went back to Children’s, and that’s when Alexa told me a little bit more than what I knew.

 

Mother of Alexa, age 16

green_sc_neuro The immediate recovery
At this point he’s still in the hospital but we don’t know what the situation is. They take out the catheter and he’s not peeing on his own. I had done some reading and heard about people coming out of surgery who say their bladder went into shock and it took them a while before they could pee on their own again so they had to intermittent cath for a while. So I said, “Okay, I’m not going to freak out about this,” but the kid could not move his bowels, and we had to basically clean him out with medicine, you know, laxatives and all of this. Poor thing, he couldn’t do it, he was a mess…and we still don’t really understand the scope of what’s happening. He also is somewhat numb, he’s lacking in sensation in his groin area. Again we don’t know how long this is going to last and the doctor says, “You know, this takes a long time sometimes for the nerves, the pathways – the nerves regenerate, but be patient. It could take a couple of months, it could take a number of months, it could take a year, and you could still see changes.”

Mother of Henry, age 12

 

green_sc_neuro After spinal surgery
He couldn’t pee on his own. He could push. What we learned to do was he would sit on the toilet and he would push. He would physically push, and if he did that he could move his bowels. So it was almost like his body wasn’t really helping him. Usually you do it in concert with your body and your brain working together, but this is how he handles it now. And sometimes he would pee a little bit when he did that too. So if he wasn’t cathing, he could empty his bladder somewhat on his own – almost empty probably, but I mean, he’s forcing it.

Mother of Henry, age 12

 

green_sc_neuro I wasn’t too happy with that one!
When he got home, things started off okay. They had the hospice nurse come over with me to make sure I was able to cath him, and I was doing fine with it. She was actually very pleased and surprised with how well I was able to do it. We were able to keep everything clean, but then he did come down with an infection, actually a pretty bad infection. They tested his urine before we left when they took out the suprapubic catheter. They took that out, they tested his urine, but they never called us, and his urine had come back positive for a high bacteria infection. I called down to Children’s and said, “Look, he’s got a high, high fever, he’s lethargic, he’s not responsive.” I had to bring him back down to the hospital…and that’s what I was told when I got back to Children’s, that they had already run the results and gotten them back. They said, “No one called you?” I guess the results came back on Tuesday, and Thursday I brought him back to the hospital. So I wasn’t too happy with that one! Other than that, he did pretty good with the recovery.

Mother of Ethan, age 13