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Wednesday, February 13, 2008

Parent Nightmare: daughter's test results

So, today we had that "re-testing" to re-evaluate my daughters Vesicoureteral reflux a/k/a uninary reflux. This is where when expelling urine from the bladder some urine gets sucked back up through the ureter(s) toward the kidneys. It is not a good thing.

MEDICAL EXPLANATION: At her last testing she showed a level I or possibly II. Reflux may be mild (Grades I - III), or moderate to severe (Grades IV - V). Grades IV - V mean that the urine is reaching or possibly "backing into" the kidney -- which results in kidney damage. So, it was an issue to be concerned about and re-addressed [today] to see if it would clear on it's own or need further, more invasive attention.

A LITTLE HISTORY: Aubree had been potty trained excellently for four months or so. She would even wake 2 to 3 times a night, sleep walking her way to the potty. At, the time I actually complained at having been woken so constantly night by night. (Look where that got me/her. Now, I feel selfishly shameful.)

Suddenly she started having little dribble incidents. And, she was having trouble holding her urine. And, she needed to go to the potty constantly and it would seem that she had emptied her bladder -- only to tinkle in her panties two minutes later. We were going through 25 pairs of panties a day and I couldn't hardly take her anywhere without sitting her on the portable potty seat before and after every errand -- and, even pulling off the road at times, just so she could go. She was constantly rashed, sometimes quite horribly. And, she began having UTIs.

TODAY: All was well and I was happy this day was finally here to determine and explore our options. Although, at the same time, I was very anxious and apprehensive that the feelings I've kinda' been having -- might be a probability, due to the last several months of dealing with her "issues."

She pleasantly complied with the procedure until the part where we had to hold her arms above her head and they inserted a catheter into her bladder (through which they inject water and a dye that will show up on the "camera" monitor). At this point she fell completely apart....crying, fighting, totally uncomfortable. Meanwhile, I continue to try and distract her with different stories, things to do, and of course offer her "candy" when we get finished, if she'll cooperate. [CANDY can be a very, powerfully, persuasive thing]. What was about 15 horrible minutes seemed like 25 - 45 waiting for the "doctor" to come in to perform the procedure.

She finally did and Aubree and I were both impressed at being able to "see inside" her and see her bladder fill up, see her kidneys, see....the reflux....I had seen this at the last procedure. This time the reflux went all the way up to her kidney. My heart flipped, then my chest tightened. My fingers started getting numb and I felt a panic attack coming on. I knew this was NOT good.

I question the doctor and she plainly agreed, "Oh, yes, that is a level four." HOLY FLIP! HOLY FLIP! Holy crap! Oh shit, oh shit, oh shit! I am completely freaking out inside....I play it cool. "Come on Honey, lets get dressed and go see the doctor for your review." Everyone is nice and smiling and sending us on our happy way. They don't know that I know what this means.

I mention to my husband on the way down the corridor to the Urologist's office, "Honey, do you know what this means?" [He had no clue] I only offer that Level IV is bad....and, definately not good. There will be some surgery.

The next 35-40 minute wait was unliveable. I'm pacing at a frantic rate, all the while trying to play along with Aubree in her little games in the treatment room. DH is drawing on landscape for the house as a means to pre-occupy himself. I start tearing up. I almost stop breathing. I am desperately fighting off the panic attack that is about to take over me. I am picturing them cutting her open and messing around with her insides. Mind you, she has previously had two eye surgeries which were frightening as she is so young -- but not nearly as invasive.

DH complains for me to sit down that I'm driving him crazy with the clippity clop of the heal of my boots marathoning back and forth across the treatment room. So, I sit but my knee is bouncing so frantically that the sound is almost worse. FINALLY, the doctor comes in. Asks some questions, history (he's a different doctor, but with the same group). I'm full of all the answers....and going nuts....waiting for, wait here it comes "So, let's discuss the results of today's VCUG....she was a level I. Now, she is a level IV. So, we need to deal with this." And, he breaks out his little pictures of the urological system.

As he is explaining the problem of which I am already aware and begins discussing procedures he can see the tears welling up in my eyes [I can't take any pressure anymore I sware -- at least not when it comes to my kids]. He begins to glance a little more frequent at my DH while I fight to maintain my composure.

THE GOOD: Luckily, they now have this procedure where they can enter through the urethra and inject a "sugar like" [but unabsorbable] substance under the tissue at the base of the ureter where it attaches to the bladder. The first time it is 60-70% effective. Sometimes, a second injection is required, with about 80% effectiveness at that point. If that doesn't work, then they go in and "re-implant" her ureter into her bladder. (The thought makes me quiver and shiver.)

SO, we've got one to two good chances to beat this thing before it could become a really, serious, serious, issue. We take Aubree to pick out her candy and to lunch at her favorite [well, our favorite] pizza joint. I walked immediately to the beer cooler, grab a bottle of Shiner Boch, open it...and slam it back. I really need about three. But, I breathe....I think....I eat my salad and a cheesy meaty slice of pizza and I Glass is half full. It teetered for a few hours there...but, so far I have it in balance, though least for the next two weeks.

That is when we will endure the first procedure, though outpatient (which is great cuz' I can dote on her all day while Big Brother is in school)....and, I can hope, pray, cross my fingers that the first one will take and restore her to her perfect angelic glory -- less the tarnished halo.



Krishna said...

I can't believe they kept yall waiting that long knowing that she is waiting--prepped for the test and then waiting that long for the doctor knowing that you are a nervous wreck. Let me know when and where and I'll come sit with you and help you take your mind off the surgery and maybe the time will pass faster.

Farmer*swife said...

It all seemed standard procedure and they were all great. But, it got to the point that I kinda' knew too much before they were able to "share it with me."

We Mom's, tend to look things up and learn.

krishna I so totally appreciate your offer. It should be a hopefully easy outpatient surgery this time. I can never know what to expect out of her after the two she has been through (eye wise).

But, if she's up for a visitor later at home? Or, if she has to stay home an extra day? We'd love to have you and Avery out to take our minds off it (Payne and Mason would be in school). THX! Gal!

Scottifer said...

Hey Sis give my Niece a big hug and kiss from her Uncle Scott. I'm so sorry. I'd be flipping to if it were Drew. Y'all need anything let me know I'll head down there.

Love y'all bunches,
Scott Joel

bandnhurt said...

Sweet Angel. She is one tough little girl. We hope everything goes smoothly and that you only have one more "procedure!" Stay strong and keep your positive spirit! We are here if you need anything at all.