Autism Mom

Our Autism Journey Began in the Kidneys (Part Two)

Konrad and I ended up staying 3 days in the hospital.  I never left his room.  I’m convinced dry shampoo and face wipes were inspired by moms who endured such stays.

 

Mr. Community Hospital Doctor referred Konrad to Mr. Kidney Specialist at DeVos Children’s hospital.  The new doctor ordered a VCUG. I wrote that down to google it later.

Of all the tests, I learned to hate this one the most.  A VCUG, or according to doctor Google, a “voiding cystourethrogram, is a minimally invasive test that uses a special x-ray technology called fluoroscopy to visualize your child’s urinary tract and bladder.”  That sounds simple.  What it *really* means is that they insert tubes (without anesthetic) into your son’s penis.  The tubes insert a dye that can be seen on ultrasound screens.  Then they wait for your son to try to urinate.  When they attempt to urinate, the dye allows the doctors to see and record the function between the kidneys and the bladder.

Once again, they asked if I wanted to stay with him for the procedure.  I looked at them in complete disbelief.  I could not imagine leaving my infant.  He was only 9 weeks old.  I’m not sure if my presence helped him at all, but I was NOT going to leave him. I held my baby Konrad down as he screamed in agony.  His little face scrunched and writhed in pain.  I held his hands and I sang to him.  I sang “Jesus Loves Me” over and over. I’m not sure if I was trying to convince my infant or myself.

After the test, they handed me a CD of the kidney images to take to Dr. Kidney Specialist on the other side of the hospital.

I walked through the pedestrian walkway over Michigan Avenue that connected the children’s hospital to the urology wing.  I held him against me as I walked, pressing my hands against his back and praying that healing could pass from my hands to his little body.  As I crossed that walkway, I felt both eagerness and dread.  I looked at the cars below passing under us.  Just cars passing by.  Cars on the way to work, school, groceries, and countless other mundane tasks.  I wondered how many mothers with sick infants and children had walked that bridge with cars passing below.  Cars passing below not realizing just above them were women like me pleading with the universe for a good answer on the other side of the bridge.

There weren’t good answers on the other side of the bridge.

As I sat in the waiting room, I decided Dr. Kidney Specialist needed an interior decorator.  His office had grey walls and grey striped carpeting.  It was devoid of any toys, children’s books, or any sign that this man worked with children every day.  It was as if the office itself was designed to suck any remaining hope you had as you walked through the door.  It looked like despair.

The nurse called us back to the room. As she was leading us to the exam room, she asked me “So how are you doing?”  I realize this is a simple question on any other day, but on that day, I didn’t know how to answer.  Do people visit urologists on routine issues with infants?  I mean are there moms out there that just ask for preventative infant check-ups with the kidney specialist? The honest answer to how I was doing that day would have been “desperately numb with a growing sense of doom”.  I decided to go with “fine, thanks”.

Inside the exam room, I sat alone again with my baby Konrad.  Holding him, rocking him, and praying.  It seemed so silly to pray.  The answer was already on the CD we got in the ultrasound room.  What was I praying for? Peace? Strength? Guidance?  I wasn’t sure, but I also didn’t know what else to do.

Mr. Kidney Specialist finally arrived and asked for the CD.  He put the images on a screen and pointed to both Konrad’s kidneys.  He said calmly and without affect stated, “He has damage in both his right and left kidney’s.  The left is in worst shape than the right.”

I once again summoned strength from the tips of my toes. I would not cry.  Deep breaths. I said, “Okay, so what do we do?”

He flatly said, “There’s nothing we can do.  Kidney damage is forever.  Once you get kidney damage, there’s nothing we can do to fix it.  He also has kidney reflux. Grade 5 kidney reflux.  That means the valves between his bladder and his kidneys do not function properly. Because the valves don’t work correctly, they allow urine to roll back from the bladder to the kidneys.  The force with which this happens on Konrad is so strong that the tubes actually twist and prevent the kidneys from emptying again. This is why they are swollen.”

He further explained that Konrad would need to be on baseline antibiotics.  We would need to take him to the hospital anytime he hit a fever of over 100°. We would redo the VCUG in 6 months to see if any it got any better.  Basically, we had a diagnosis, but he was too little to do anything about it.

I walked back over the bridge on Michigan Avenue with Konrad in my arms.  I was tired. Alone.  I wasn’t sure what I was supposed to think or feel.  It wasn’t good news.  But then again, many parents get worse news everyday.  I told myself I should be thankful…I wasn’t thankful.

I’ve driven down Michigan Avenue many times since that day. I’ve seen the mothers pushing strollers or carrying infants in their arms.  I never drive under the pedestrian bridge without saying a prayer for the mothers walking above.

 

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