Wednesday, February 24, 2010

Edited post on kidneys (again...only if you're interested!)

This girl's got style! Don't you agree?? So she calls downstairs and asks, "Mom, can I wear a dress?" and I say "Sure, but make sure you put some tights with it so your legs aren't cold!" and this is what happens. This is her Easter dress from when she was 2. And those are her "Bear Bottom" tights because yes, there is a bear face on the tush of the tights. Unfortunately with the negative 200 degree temperature today, little miss did have to change her dress, but I am amazed that she could still get this thing on (and I'm amazed I still have this dress...why is that?)

Anyway, she's got a little thing going on with her kidneys. Maybe. And the only way that we would know for sure is to do a pretty invasive test that even a grown-up would not want done to them in a million years. 2 years ago, Zoe was hospitalized with a crazy high fever. While we were in the hospital, they ran every test in the book on her, of course including urine tests. They found her urine looked terrible, but they don't know if that was the cause of her infection/fever or that because her fever was so high, she was dehydrated and that's why her urine looked awful. Could be either way. Since that time, she has had at least 3 more UTI's (urinary tract infections) that I really only suspected because she wet the bed a couple of times (the girl's got a bladder of steel, and has been potty-trained at night since just over age 2). She only complained about pain maybe once or twice, the tough little cookie. So at my insistence, we saw a pediatric nurse practitioner who specializes in nephrology. Did you know there was such a thing? Neither did I, but we love her to death!

So NP Carissa tells us that it is extremely abnormal for little Z to be having these UTIs. Now, her regular NP was not missing something, I am the bad mommy in all this because I was taking Z in to have her urine checked at walk-in clinics, thinking that we could get a simple UTI cleared up with an easy script. So this is my bad. So 6 months ago, she ordered an ultrasound of Zoe's kidneys to check their size, shape and position to make sure nothing was way off with the anatomy. Very interesting to see your kid's insides, and Zoe was so cute because she thought she might have a baby in her tummy, since she was with us when we had our ultrsounds with Tate! :) Anyway, come to find out her kidneys are pretty small for a 3 1/2 year-old but then I question the fact that they are measuring on an American growth charts. But then again, they measure her height and weight on American growth charts...if they measured that on Ethiopian growth charts, she'd be off those for sure! Carissa thinks it's possible that Zoe has a congenital condition where urine refluxes (goes backward) from the bladder back up into the kidneys, which can lead to scarring. There are one-way valves that allow urine to come down from the kidneys into the bladder and stay there, but in this particular condition, those valves are two-way valves, allowing the urine to go both ways. The way that they think there could be scarring in the kidneys is that there is poor growth of the kidneys (i.e. small kidney size). Have you read this far?? You get a gold star!

So what is the problem with this condition? If (and it is an if since we don't know for sure) Z has this reflux condition, her kidneys could be scarred, the valve problem is not treated (treatment means surgery to fix it), down the road she could have kidney damage, high blood pressure, and potentially kidney failure. And her nurse-midwife mama immediately goes to worse-case scenario and sees dialysis and a kidney transplant! Which is WAY worse-case scenario, OK? Many, many, many kids who have this (it is a fairly rare condition) actually outgrow it on their own without the surgery. For some reason, the valve "strengthens" itself and the reflux no longer occurs. Which would be our hope if Zoe would have this, because Lord knows she doesn't need another procedure, bless her tough little heart.

Which leads me to the test and my request for your prayers for us and for Zoe. Like I said, we love Carissa (our NP), and trust her to offer us wise counsel on what to do for our girl. She has strongly recommended that we do this test for Z. It involves taking a series of pictures of her bladder, ureters (tubes from the kidneys to the bladder), and kidneys via x-ray and ultrasound. They will have to place a catheter (yikes!) and fill up Zoe's bladder with fluid and a dye. They have to completely fill her bladder to see if the fluid "refluxes" back up into the kidneys. The reason she can't be sedated for any of it is because she then has to get up and empty her bladder and they have to ultrasound her again to make sure she can completely empty her bladder. And the length of the procedure all depends on how "cooperative" she is...the less cooperative, the longer it will take. Breaks Mama's heart. But on the positive side...if she tests negative for the reflux, we can potentially be discharged completely from the nephrologist's care! No more ultrasounds every 6 months, and not that we don't love C, but it would be one less thing to worry about. If she does have the reflux, at least we would know and then we would cross that bridge. Please pray with us about what to do for Z and to calm my heart and mind about what the best thing to do is. I think God is nudging me in this direction but that doens't mean it's easy. Thanks for reading, if you've gotten this far...and thanks for praying.

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