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Tuesday, June 22, 2010

Vesicoureteral Reflux

Big scary word, Vesicoureteral. Don't you think? Yeah, I thought so, too.

Maybe a better name to go by is Kidney Reflux. Its a bit more manageable. You can clearly tell, right away, what organs/part of the body, it affects. But, its still a little intimidating.

In fact, it was extremely intimidating to me a few years back when they told me that my little 15 month old daughter had Kidney Reflux (and when I say little, I'm not exaggerating. She only weighed 15 lbs or so.)

I had never even heard of Kidney Reflux. Ever. Luckily, though, God had put people in my life that could advise me and fill me in. You see, a few years prior, I was a nanny for 2 years to a sweet little boy named Oliver. The mom was a child psychologist. Dad was completing his residency at a local hospital. The really cool thing is this: he was completing his residency in Urology. So, I quickly called them up after O's diagnosis. They were able to calm me down and tell me that it wasn't such a big deal. Its pretty common, and easily treated and often outgrown. Whew! (this all took place while I was waiting to see the pediatric urologist. I think it was in the waiting room, actually. lol.)

So, life moved forward with our little kidney reflux girl. Enough VCUGs, (insert catheter into bladder, fill bladder with dye, watch on x-ray) that I actually lost count. Antibiotics every day. Fevers required an immediate urine culture. But, really, in the over all scheme of things, things were manageable. We were waiting to see if baby girl would outgrow her reflux, like 75% of patients with her grade of reflux did.

When she turned two and a half, we had another VCUG. This time, the pediatric urologist thought that she might be at that age where we would start seeing improvement. We went to the hospital, they gave O some Valium and laughing gas (oh gosh, that was a trip. she still managed to wrangle herself loose with all of the sedation! but, that's another story.)

The radiologist told me the news. O's reflux was showing up as a more severe grade of reflux. In her initial VCUG, she was diagnosed with grade II (the grades are from I-V with I being the least severe and V being the most severe. ) This particular time, the x-ray was showing grade IV.

With the specialist, we decided that surgery was the best option. A little over a month later, O went through a procedure called Deflux. We kept her on the antibiotics for a few more months, until we could determine whether or not the procedure was successful. Thankfully, it was! O was able to stop daily antibiotics right before she turned 3. When she was a little over 3, we were released from the uroligist. Sort of.

Here's the thing. Kidney reflux seems to run in families. A sibling of a reflux patient has a 1/3 chance of it. A was tested at 6 months and was given a clean bill of health. We were given instructions to bring any future child in for testing, too.

So, I called the office, asking if baby I needed to be seen and when. The first person I talked to said that he didn't need to be seen. He is a boy, and boys are less likely to have it. I was extremely happy and didn't think anything of it until his 4 month appointment. His pediatrician said that he needed to be checked.

I went into the urologist's office this time, talking to someone in person. She told me the same thing as the previous nurse, that boys don't need to be tested unless they have symptoms. But, then she said "well, wait. what grade did your daughter have?" I told her. She said, "oh. well. that makes a difference. let me talk to dr. H and give you a call back."

That conversation took place last Tuesday. When I didn't hear back from her, I assumed that baby I did not need to be seen (hoorah!). But, alas, I was wrong. They called yesterday to inform me that baby I needs to get tested. And not just the preliminary ultrasound that they normally do. He needs to just go straight to the VCUG.

Its weird. When I thought that he was going to have to be tested, (back when I had him) I wasn't upset about it. But, the thought of NOT having to do it, then being told we had to do it, makes me upset. Weird, no?

So, now, I'm in this place that is sort of unhealthy for me. The place where I freak out. The place where I think about the 2 week long fever Zeke had with no explanation (that ended in antibiotics for his ear, which would've cleared up a UTI if he had one...) The place where I think about his stint with smelly urine. The place where I'm convincing myself that he actually has Kidney reflux when I have no proof and no real logical reason to think that.

I'm trying to give it up to God for now. Find my peace in Him.
1 Peter 5:7 Cast all your anxiety on him because he cares for you.

7 comments:

Sarah said...

Oh, not knowing is the worst part. I just hope it's all over with quickly and then you can have a definite answer one way or another! And obviously, preferably an All Clear on the reflux! But either way... limbo is just awful. Hoping all goes smoothly and Baby I has no need for further tests, antibiotics or surgery.

Heidi said...

How soon is his testing? I hope you get a clean bill of health as the result!

Kristin said...

Praying for you and for your little one. It is such a scary place to be - not knowing. I will be praying for a positive outcome.

Tracy said...

Heidi- His test is July 28.

Photogrl said...

Spending time in limbo land is the worst!

Holding you and the little guy in my thoughts and prayers...

((HUGS))

d e v a n said...

oh man. I'm sorry. :( I know it was such an ordeal before and I really, really hope you don't have to go through that again!!!! P&PT that the test goes smoothly and finds nothing. ((hug))

Mama2Boys said...

(((hugs))) Tracy...I had that as a kid, I hope he gets a clean bill of health or at least a lower grade VR then O had.