One aspect of Kennedy's syndrome that doesn't get a lot of discussion is the fact that she was born with only one kidney. Her craniofacial syndrome can affect any organ system in her body, and most regularly affects the heart. So far, Kennedy's heart has been okay. But although a special Level II ultrasound showed two kidneys (or at least that's what the tech and radiologist claimed), Kennedy was born with only a single kidney. It is larger than the normal kidney and the placement is different than a left or right kidney would be.
Thankfully, her kidney works, albeit different than yours and mine. Kennedy can go many, many hours (I'm talking like 10) before bathroom trips. She is not one that can go on a schedule and she cannot "try" as we all force our children to do before leaving the house or climbing in the car. When she has to pee, she has to pee. When she doesn't, she doesn't. Simple as that.
All of the information you can find will tell you that those born with one kidney can live healthy, normal lives and most likely never have any kidney trouble. But you've also heard me say that we are always waiting for the other shoe to drop. That's the thing with her syndrome - their is no norm, anything could go haywire at anytime, and all of the information you can google doesn't necessarily apply. On top of that, Kennedy has a long history of high blood pressure issues on her maternal side (I've been on medication since I was in my late 20s), and high blood pressure doesn't play well with kidneys either.
So bottom line is, we have to do everything we can to keep her kidney healthy. We have a kidney function test performed every year. We limit the salt in her diet. We very much limit her caffeine intake (Coke on special occasions only). We test for strep with every sore throat that lasts more than a day. We keep her away from those that have strep throat. We make sure she drinks lots of water. We don't let her play contact sports. We have a 504 Plan in place that provides her bathroom access as needed at school. We avoid ibuprofen and other NSAIDs, which break down in the kidneys. And this last one is not easy considering the pain that she is often in after surgery or with her back, not to mention all the high fevers with her flu bouts and sinus infections.
And we hope that ever there comes a time when she needs a kidney, there is a selfless person willing to test for a match, and willing to donate. Her entire family is ready to donate one in a heartbeat, but we also know that it may not work out that way.
So as I worry when I ask at 3pm if she's peed today and the answer is no, or as I worry because it is 3pm and she has peed 4 times already...these are the stories I need to keep that worry in check. I want her to live a long, healthy life with her own kidney. But if that other shoe drops and her kidney should fail, I need these stories to remind me that there are people in this world who go above and beyond. And although these stories were living donations, PLEASE BE AN ORGAN DONOR. Your kidney (or heart or eyes or lungs or etc.) will do you no good when you've left this earth but may just save a life.
(and ps - if Kennedy reads this one she may just kill me :) )
