Double Trouble

In March, just before we went to Newfoundland for a week, Claire got a horrible ear infection. The doctor put her on antibiotics and we went off on vacation thinking she'd be well in a matter of days.

A week later, we came back to Ontario and within a day or two she was sick again. The child can spike a temperature that will scare even the most experienced nurse (seriously...we've made a couple blanch when they see 105.4 degrees on their thermometers). I took her back to the doctor and was told that her ears were clear and her throat looked good and her lungs sounded great. She must have a bladder infection. Great. Just great. More antibiotics were prescribed and she was sent for a kidney ultrasound just to make sure there was no damage.

It took a while to get the appointment for the ultrasound. In the meantime, Claire had frequent low-grade fevers that she could function on but always freaked me out a little bit. She was enrolled in school and the kids were always in and out with some cold/flu or other so we just muddled through. Many days she would go to school feeling warm but would be fine by the end of the day. Once or twice she was sick enough to be kept home for a day or two with fevers and general feelings of "yuck". Her behaviour at school went downhill to the point that neither her teachers nor I knew what was causing them or how to handle them. It was a rough spring.

In June, we went for the ultrasound. Honestly, I almost cancelled the appointment because I thought it was silly to have a look at her kidneys after one kidney infection. It was a quick appointment and unlike prenatal appointments, there really isn't much to see or talk about so we were in and out with a "the doctor's office will call you if anything shows up" from the technician. I went home fully prepared to forget the whole thing.

Bright and early the next morning, my phone was ringing. The doctor wanted to see me about Claire's ultrasound. The nurse said it was nothing to "lose sleep over" but to drop by the next day to hear about the results.

It turns out that the ultrasound showed that Claire has a double ureter on her left side. Let me explain: each of your kidneys has a tube that connects it to your bladder. That's your ureter. Most of us only have one per kidney and that system works fine.

A ureter is a neat little tube because it is a one way only device - urine can leave your kidney and travel down your ureter to your bladder but it can't go back up to your kidney after it leaves. Kidneys like making urine but they don't like having it stick around for long (I know parents who feel that way about their kids). If urine hangs around in your kidney, it can cause kidney damage. And nephrons are like neurons...once you lose 'em, they don't come back.

The problem with having two ureters is that one of them is often weaker than the other. A weak ureter is not good because it will often allow urine to reflux back into the kidney on the same side and that will cause infections and maybe even permanent kidney damage. Scary stuff.

Ok...back to Claire. When we were in the family doctor's office that day we didn't know much other than that she clearly had two ureters on one side and that may or may not have caused her one confirmed kidney infection months and months ago. My brain started recalling all the low grade fevers and days on the couch with higher temps and the idea that there was something more than a touch wrong sounded more than a touch right.

For months, this was a frequent scene at our house:

(she's like me...she gets sick and the light drives her bonkers so we have to cover her eyes).

Our family doctor referred us to a pediatric urologist and then we had to wait for an appointment. We waited all summer. While we waited we continued with the off days and the slight fevers and then we noticed that her pee started smelling really terrible. Not strong...foul. When we were home in the summer my mother said that her pee smelled just like my elderly grandmother's pee (and she's in confirmed kidney failure).

We finally got to see the urologist and he put her on prophylactic antibiotics, sent us for another ultrasound, and a voiding cystogram. The cystogram was not something I would ever voluntarily sign up for but Claire was a real trooper through the thing. I had to sit behind the shielded wall with the radiologist while DH held her hand and that was both excruciating and rewarding. Excruciating because I wanted to be out there hand-holding, rewarding because I got to ply the radiologist for information.

It turns out that one of Claire's two left-sided ureters does indeed let urine back into her kidney. When we had the test, we watched her bladder fill completely and then, when she started saying she had to pee - WHAMMO - reflux. Then she suddenly didn't have to pee anymore. This makes sense because the urine that races back into her kidney relieves the pressure on her bladder. Not surprisingly, this is also a scene that happens a lot at home with her. One second she is DYING to pee, the next minute she's on the floor playing with puzzles with Jillian (while urine poisons her kidney...nice).

The second ultrasound added to the story. It turns out that the anatomy of her left kidney is sort of off too. Her topmost ureter drains the top part of her kidney and her bottom ureter (the faulty one) drains the lower part of her kidney. The two parts of her kidney barely communicate and the bottom one shows signs that she's been having this reflux for a while.

The follow-up with the urologist was short and sweet. He says she needs surgery to have the problem repaired and she needs it sooner rather than later. He says that if she were going to grow out of the problem, she'd have done it by now. I always knew that surgery was a possibilty but until he told me she needed it I deceived myself into thinking it wasn't going to happen. Last I heard from him he said his secretary would be in touch with a surgery date and I took Claire's hand and somehow managed, in my daze, to get her into the van and drive us both home from the children's hospital without freaking out. Yesterday the office called and told me the date for the surgery - December 18th. I'm glad it will happen before Christmas. There's no greater distraction for a little kid than the majesty of Christmas. It still scares the bejesus out of me but the Vulcan in me knows it is for the best. She needs fixin' and she needs it now.

I'm both stressed and relieved at this news. Stressed because the thought of taking my 4-year-old, who won't grasp the concept, in for a surgery to fix a problem that she barely knows she has is scary. The most she knows is that she has a "pee problem" and that the "pee doctor" says she has to drink lots and lots of liquid so she doesn't get sick. I'm relieved because something is going to be done and we won't have to live with worry and fevers and infections and antibiotics (I hate having her permanently on those) anymore.

Why am I telling you this? I don't rightly know. I guess the blog is my way of making a record for the kids when they get older about how life was around here when they were little and this isn't a chapter I want to leave out. Claire might want all the details someday. I think writing it all out is also my way of coping with a scary situation. I also think I wanted to tell you guys about it because I think it explains why I've been sort of scarce on the blog for a good portion of this past year. It seems like a lot of things in life have been overshadowed by this mystery illness of Claire's and it is hard to throw myself wholeheartedly into anything else - blog included. I'm not upset and I'm not brooding but I'll be happier once this thing is behind us.