Reflection and a Look Ahead

For many years, Larry and I have attended a Derby Party benefiting Children's Healthcare of Atlanta.  Many of our friends support this event as well, donning fabulous hats and Derby attire.  I had the honor of speaking as a "patient family" on behalf of Children's at this year's event.  Though I've spoken a dozen times for Children's in the past, speaking in front of my friends made me nervous.  My friends all know and love Ari, but most didn't know his history or ever see pictures from some of the really tough times.  I had the opportunity to share his story, and now it's as if a weight has been lifted from my shoulders... the unintentional secret is out there.  They have a glimpse into the past six years and can piece together how the course of events helped shape us into who we are today.  They also heard a little about how much time we invest daily into Ari's care.  I think this part was the biggest surprise for everyone.

It was hard for me to relive the past, telling some stories I tried to forget and some I never want to.   I really believe that for a few, the responsibility we bear is too much to bring into a friendship.  I wonder if some people made a mental note of this and they'll gradually start to pull away.  On the flip side, maybe they admire how we've handled the challenges and want to join us on the journey.  We never know, but I can say with conviction that we appreciate each and every friend who has welcomed us into their lives and treat Ari like he's just one of the boys. We are also so grateful when  their children treat him like a peer instead of a kid with special needs, making accomodations without drawing attention to it.  

On a different note, things are good right now, but they're about to change as we prepare for the next major surgery.  As most of you know, we manage Ari's urine output by catheterizing him through a channel that his urologist created out of a piece of bowel called a Mitrofanoff.  It goes from his belly button to his bladder.  This works well, but the Mitrofanoff kinks, making it impossible to catheterize Ari at times, which could lead to kidney damage.  Additionally, despite frequent cathing,  Ari still leaks urine, requiring him to wear a diaper.  We're lucky that he can still fit into size 5T pull-up, but this is the largest size.  The next stage is adult-style incontinent diapers.  As he progresses in school, we see this as a major social setback for him.

Ari has Urodynamics this Wednesday, a fluoroscopy test (that he hates!!) that measures the bladder and urethrea's function and efficiency.  He will also have a VCUG (voiding cystourethrogram).  The outcome will be reviewed at an appointment on Friday.  The next step will most likely be an artificial urinary sphincter.  It is a large, invasive device with a cuff that wraps around the urethra, a pressure regulated balloon that would be placed under the abdominal muscles, and a control pump that would be placed in his scrotum.  He would most likely have a Mitrofanoff revision at the same time.

I hate the thought of another summer where our plans revolve around a surgery, but it's better than doing it during the school year.  Who knows, maybe Ari will start 1st grade without a pull-up?  There's one caveat... he has uncontrolled bowel dumping, too.  It doesn't happen often, but when it does, it's bad.  Last week it happened twice, before that it was 3 weeks.  Do we risk putting him in underwear, knowing a bowel accident could happen, but most likely would not?  I'm open to opinions on this one. Maybe we should wait until he gets a little older and recognizes the signs that it's about to happen.  He said he can't feel anything, but many there's a little sign he could identify later?  Obviously, there is still a lot of unknown.  I'll send an update after we determine next steps with his Urologist.  Please pray for calmness, bravery, and tolerance for him during this Wednesday's testing.  He needs it! Thank you!!  More next week...

Larry and I at The Derby Benefitting Children's Healthcare of Atlanta