Living with Pediatric Urology Issues

My DD had her first diagnosed UTI in November 2007. She may have had others before that, but didn’t complain of pain or have fever so I may not have known. The Dr’s tell me VUR is congenital so she’s always had it. She potty trained around age 2, but always had to wear a pull up at nap time and bed time. We even pee right before nap but she almost always wet until recently at age 4 she seems to have more dry naps than wet ones.

She had two more UTI’s in April and June, during that time we fired our family PCP and went to a pediatric PCP because I didn’t think it was ‘just her age and holding her urine’ causing so frequent of UTI’s. Her pediatric Dr ordered a VCUG and renal ultrasound in July. That is when we learned she had reflux and that her right kidney was much smaller than the left. L is 8.7 I think or 8.something and her right kidney is 5.83 (I know nothing but the urologist says that’s significant). So she’s been on Septra (low dose antibiotic) since June. To aggravate problems she also struggles with constipation so between Miralax and adding fiber to her diet we try to keep that at bay.

The VCUG was awful. Two nurses held her down while they put the catheter in her. I had to hold her hands and head. I was glad to be in there with her, but man to listen to her scream to want to go home was awful. They did not sedate her and my PCP had said they would. Come to find out they said they do only if the Dr orders it!! UGH. I read another post that mentioned how they ask the child to pee while on the table…. yes , that’s awful. My daughter wanted to pee so bad and kept yelling to go on the toilet. So finally they let her off the table and we went in the potty.

Before seeing the urologist all I read and what the PCP told me I thought we’d be in this for a few years with recurrent urine tests and staying on the antibiotic to be retested with the VCUG next year.

Well, we saw the urologist Sept 11th, he said her stunted growth in the right kidney is due to scarring and we need to do open surgery to do ureter replacement. I balled. He says no big deal, just a 3 hour surgery and overnight stay. She’s 4!! Its a big deal to me!! We are having a 2nd ultrasound done just to make sure the measurements are accurate. He also says the left kidney will compensate for the right being smaller. So I am concerned about the impact that will have on her having one organ do the work of two. I have read of the risks associated and feel kind of devastated at this point. Thanks for letting me share.