Wednesday, February 25, 2015

A Bladder and Kidneys Update

After a restless night of sleep a few months ago, I no longer tell Anna of her urology appointments until the morning of.  There's no reason to stress her out unnecessarily.  She had her urodynamic study two weeks ago and then an ultrasound and follow-up with her urologist last week.

Good news:  There hasn't been scarring or damage to her kidneys.

Bad news:  The VCUG in August showed a return of the reflux to the right kidney.

Because she is catheterized, Anna is at a higher risk for infections.  The risk with reflux is that infected urine could back up into the right kidney and cause a kidney infection which could lead to damage to the kidney.  We briefly saw her urologist during the urodynamic study and he mentioned the return of the reflux and that he would discuss "treatment" during the follow-up appointment.  I spent a week fearing that he was going to rush us into the operating room to correct it.

During the follow-up, her urologist outlined the three options available to treat reflux:
  1. Injections at the site of the reflux.  Unfortunately, this doesn't usually work for those with neurogenic bladders.
  2. Surgery
  3. Mother Nature
I really don't want to subject Anna to surgery.  I'm optimistic because her VCUG in 2011 showed no reflux.  Thankfully, her urologist is on the same page.  He wants to re-run the VCUG while also doing different testing of bladder capacity.  They want to ensure that her bladder isn't shrinking. Anna takes ditropan 3 times a day to keep her bladder soft and expandable.  

Anna's urine had been looking sketchy to us but she hadn't had any fevers and it just wasn't following what we had seen when she's had infections in the past.  The focus is always on fevers so without one, I was having trouble believing that she had an infection.  I asked them to test her urine at the appointment two weeks ago and of course, it came back positive for an asymptomatic bacteria, which means bacteria without any symptoms.  I had no idea that this was possible.  So now we know.

Anna's been a trouper through all of this.  The appointment last week was especially brutal for her.  It took us more than two hours to drive in and then we had to wait an hour for the ultrasound.  She was exhausted by the time we headed home and fell asleep in the car, which never happens.  She also hates the taste of the different antibiotic they have her on to clear up the bacteria in her urine.  The next step is a test similar to a VCUG without the radiation, a bladder capacity scan and a repeat VCUG.  I asked if we could wait until April vacation week so she wouldn't have to miss school and to give the kid a break.  He was fine with that.

One night last week I peeked in on Anna after I had tucked her in.  She had not yet fallen asleep and was snuggled on her side hugging Zebe.  A row of stuffed animals lined the pillow next to her.  My heart broke a little.

You can read more about spina bifida and bladder/kidney issues here.


Anonymous said...

What do you do with the urine after you have cathed her?

Sarah said...

With the cath kits that we use, the urine is drained into a sealed bag. You can open the top to dump out the urine (into the toilet, or for testing.) There are some caths that are open so you drain directly into the toilet or a diaper/pull-up.

angie gwinn said...

Although I really live reading all of your posts, I especially love hearing about Anna's journey since I'm also on that journey with my 16 month old daughter. Always glad to hear she is doing well.

Sarah said...

Thanks, Angie. I hope your daughter is doing well!