Sunday, October 17, 2010

Wishing For The Best, Even When I Don't Know What's Best

I haven't mentioned it here much, but those who know me in "real life," or even just on Facebook, know that my almost 6-year-old has had recurrent urinary tract infections for the past couple years. 

She's gone through the typical series of tests, from a pelvic ultrasound to a voiding cystourethrogram (VCUG), and we've been relieved to find out that her plumbing is normal. I've been pleased with our pediatrician, who's not an alarmist and doesn't hurry to do invasive testing. But she also tells me when we reach the point that she would do the test(s) on one of her four kids, and that's the guidance we've been following. 

Showing off a cute outfit, including the matching hair bow
Tomorrow, Ellie is going to have an MRI to rule out a tethered spinal cord. An MRI doesn't usually count as an invasive test, but Ellie is young enough that they prefer to use general anesthesia to ensure there's no movement to blur the images.

Meanwhile, she is taking a daily prophylactic dose of antibiotics in the hopes that it will help get rid of any lingering bacteria that wasn't wiped out on the latest round of antibiotics. 

You may remember that I was diagnosed with a tethered spinal cord a few years ago when I had an MRI hoping for clues why my back wasn't improving after a car accident left me with severe pain. Tethered cords can be hereditary and are considered a mild form of spina bifida. Interestingly, after I was diagnosed with a tethered cord and notifying family members, I learned that my mom was diagnosed as an adult with a mild case spina bifida when she had an MRI looking for a cause for her back/neck pain.

So I'm a little torn between hoping Ellie has a tethered cord, which can be fixed surgically and could explain her recurrent UTIs as well as other bladder and bowel issues, and hoping she doesn't have one, because the thought of my baby needing surgery is scary and I'd hate to put her through the pain and trauma of surgery.

What's a mommy to do besides worry? I hope you'll join me in thinking positive and hoping for the best possible outcome, whatever that may turn out to be.   

6 comments:

Q said...

Oooh.... thinking of you and Ellie today. Hoping you are able to get some answers and some direction and that Ellie is able to overcome the infections. I am also hoping that as a family, you have someone to talk with about this. I am so grateful for EAP counseling services that have really helped us out on numerous occasions, including how to live better with and in some cases resolving some of my son's symptoms.

Best to all of you!

Mo said...

Sick Momma, The fear when your child has a medical problem is terrifying. When my teenage son started having bowel and stomach problems I was beside myself. I have Crohn's and the doctors were very concerned. He is fine, thank goodness. I hope you receive good news on your daughter's condition, and that a fix will be easy. Good thoughts headed your way for your Baby Girl.
mo

joceelyn said...

I just dropped by your blog, hi!

I'm torn for you because I grew up with a rare form of Spina Bifida that manifests itself as basically a recurring tethered cord, over and over again. I had surgery several times at Ellie's age, and I now have chronic pain because of it. I don't mean to scare you - if Ellie does have TCS, she may need treatment, but I always encourage people to ask their doctors what this could mean in the future.
Most people with tethered cord will tether again - the point is to release the cord after the growth is done so that the re-tethering doesn't cause any functional damage.
I really hope for Ellie that it's not tethered cord, but if it is, I hope you are able to get the peace you need to know that surgery is right when it's right.

Aviva said...

Hi Q! Somehow, that hadn't occurred to me/us to do until I saw your comment. Thank you! Scott is skeptical it will help, but has agreed we can try counseling both for Ellie, and for us as parents. (He's a fan of counseling/therapy in general; we even did premarital counseling with a psychologist so we'd have a foundation with it if we had problems at any point in the future.) Thank you SO much for this suggestion!

Aviva said...

Mo: I'm *so* glad your son turned out to be fine. You're so right -- it's awful when it's your kid who has the medical problem! And what really sucks in this case is the MRI results were inconclusive so we're getting sent to visit a neurosurgeon AND a urologist. (All pediatric of course). I'm so afraid she'll end up having an unnecessary surgery ... xoxo

Aviva said...

@Joceelyn: Oh no! I'm so sorry you went through that! I've been reading lately about tethered cords and the likelihood of re-tethering. Some sites I'm reading also cite medical studies that show the surgery only helps with bladder/bowel issues 50 percent of the time. Just horrifying, especially since my husband and I are unsure whether it's all just a strong-willed child who doesn't want to take the time to go potty. :-/

But I'm *so* sorry you ended up with chronic pain from those surgeries. I really do appreciate your visiting my blog and commenting about your experience with the surgery, as well as your kind words. Peace would be a good thing to attain over this.