Monday, November 29, 2010

The Scoop On Kairi's Kidneys

I was so horrified by the test for Kairi's kidneys/bladder in September that it sorta sent me into hiding. I don't know how to explain the reaction that Kairi and I had to it, but let me try to explain it the best I can, and the next 24 hours, as well as the results of the test.

First they did an ultrasound on her kidneys. It was only different in that they did the u/s from both her stomach and back. She had no problems with it and chatted the tech's ear off. From there we were taken to the xray room. The xray is actually called an VCUG as it's different from a normal xray. The put a catheter inside of her, injected dye, and took xrays while the dye went filled her bladder, and then while she voided. Let me just say, this was not a pleasant experience ... and that is the understatement of my lifetime. I won't share the horrors, but if your child has to have one, let me know and I'll try to calmly prepare you no exactly what to expect. And then I'll tell you to ask/beg/plead for sedation. Right before leaving we were told that we'd hear from our pediatrician in 2-3 days.

That night and the next day Kairi was in a lot of pain. She stopped urinating and was scared to even try. She ran a fever and cried for hours. I finally took her back to the er, where she eventually voided her bladder for the first time since her procedure. Thankfully, the hospital I took her to was the same one that she had had her tests run at (and is a children's hospital) so they were able to pull up her records. Because of this we did get some news. The er doctor told us that the VCUG showed that she had grade 3 reflux so it was relatively minor and that I could call our pediatrician the next day for more details. Of course, that information made little sense to me, so I had to do some research. Let me share with you the most helpful link I've found.

That basically explains that while she urinates her urine goes backwards up her urinary tract, into her kidneys, and then back down. It gathers fecal matter in the kidneys and once that reaches the bladder it can cause severe irritation and infections. The severity ranges from grades 1-5. Kairi is a grade three which is right in the middle. It doesn't require surgery, if it can spontaneously correct itself. Grades 4 and 5 generally require surgery. There's a 50% chance that the condition will correct itself.

Our doctor referred her to a urologist. Dr. Mercer is great. After meeting with her, the following decisions were made. One, we're not doing surgery for at least a year -- not unless she develops an extremely severe infection between now and September. She's on antibiotics anytime she starts to show symptoms. She'll go on them full time if she starts having fevers on a regular basis. She's on a schedule to control how often she pees to help train her bladder how to urinate. She's drinking cranberry juice almost exclusively. And we're retesting her next September. However, next time the test will happen under sedation, with her Daddy present. I will not be the one to hold her down during it again. She'll still fight it, I'm told. But this time she won't remember it, which will be a blessing as she's still telling her friends at school about how the doctor put tape inside her vagina. :-\ If there is no improvements by next September, then she'll most likely have surgery. It's a full bikini incision, though, which is not something I necessarily want for her. If there is some improvement, we'll continue to watch it. And of course there's the chance that it's completely well, which would be my favorite option. :) If in a few years it's almost completely resolved itself but still seems to be lingering, there's an injection she can have, but it has a smaller rate of success so it's not something we want to try unless her condition isn't very severe.

Since her visit with the urologist, she's not had a full blown infection. The few times she's shown symptoms I've had her on her meds for a few days and it's resolved itself without needing a dr's visit.

We also learned that Alex is unfortunately at risk of having the same condition. It's genetic and therefore siblings run a high risk. Also, Kairi has a large bladder which contributes to her issue. It also helps explain why she had such a hard time potty training. Fortunately,she doesn't want to test Alex for this issue unless he has an infection (although, one infection and he's immediately tested ... but I've been promised sedation for that test).


  1. My little Sidney has Grade 2 - we went through that whole process back at the first of the year. Luckily, it was a one time thing for us and she's never had any issues with it since - but she has to be re-tested after the first of the year. I dread it like a beating, although she did really good to be so little. It wasn't until about the last 20 minutes of the test that she flipped her lid!

  2. I am so sorry yall have had to go through this. I hope she's doing better!