The Moment When The NP Needed A Hug

Thursday we had our first appointment with Urology at Riley Hospital for Children. Roo is seven years old now, and still has to wear a pullup everyday. In fact, she goes through several, and as much as we've tried, she still can't seem to let us know when she needs to go, or take herself there either. It would be so much easier just to blame her incontinence on having autism, but she has so many other complexities that that would be stupid. Yes, it could be her developmental delay/autism, or it could be some sort of abnormality linked to the biliary atresia (this is a great link that explains this form of liver disease in detail).. Or it could just be something totally separate, unrelated that may even have a simple fix, who knows? So that's why we were there, to try to find some answers.

She had an ultrasound of her kidneys & bladder, and then an x-ray of her entire abdominal area. She would have had a pee test too, if radiology would have had a potty hat, but they didn't.. and she's not one to pee in a cup. No complaining here. I'd be ticked if she decided cups were for peeing instead of drinking.

The first thing we're going to try is to get her on a rigid schedule. Roo is kinda sorta similar to a cocker spaniel.. meaning that most of her accidents happen when there is an emotional trigger of some sort.. But even though we take her often, and the school takes her often, we're going to try this method. We were told she needs to be taken to the bathroom at least six times a day, her feet need to be on a flat surface & it would be helpful if she was relaxed. We were also given several really cute reward charts that will hopefully work as an incentive to help her hold it until it's time.

The idea is that we are sort of reteaching her brain when it's okay to void, and that she will go often enough that she won't be able to when an emotional situation arises. 

Now here's the part that disturbed me--well, one of two things. As I'm talking to this very nice nurse practitioner, I notice that she seems to get emotional from time to time--which doesn't happen often with doctors. And then she gets to the part that was probably setting her off from the start.. She told me that Roo may never fully get out of pullups, and that it broke her heart to have to tell parents that, but she didn't want to set me up with false hope only to not have it happen. *whew* Honestly, I was relieved! I was worried that she was about to tell me that Roo had kidney disease or some other abnormality that was going to drastically effect her. She was just a nice lady, and even now, what a relief. I didn't hug her, because that would have been sort of awkward, but I felt like she needed one. What bothers me though, is why wasn't I as disturbed as she was? I guess a parent of a typical child might be devastated by that sort of news, but we already knew it was a possibility so it wasn't so bad? Or am I becoming too hardhearted? 

The second thing that disturbed me was the additional testing that we'll be considering if several months of a more frequent bathroom schedule doesn't work. One of the tests that was described, the nicer one, Roo doesn't even qualify for. She's just not mature enough to do a biofeedback test that uses some sort of sensor stickers placed on the buttocks to manipulate a game. :-)  The other one makes me want to curl up in a ball. She would have to be fully awake (sedation sedates the bladder too, apparently), and a catheter with a tiny camera and some pressure sensors would be put the urethra and another similar one up the rectum to test the pressure &  function of her bladder. There would be child life specialists in the room to try to make her comfortable, but already it seems like a lost cause. I think she'd have the meltdown of all meltdowns, and I don't blame her one bit. Just thinking about it makes me cringe. SO, if you have any positive thoughts or prayers to spare, send them our way! This reward chart really needs to work!