Tuesday, June 5, 2012

Badge of Honor

The month of June is declared "Riley Month."  What is Riley you say?  Riley Children's Hospital is in Indianapolis, IN with nearly 1400 sick beds, the most of any hospital in the country.  The reason June is so very special is because there is a fundraiser called Joshua's Ride for Riley on June 24th raising funds, awareness and fun for Riley Urology who saved the life of Joshua.

This month you will hear stories from Riley kids (like myself), parents and supporters to generate excitement for the wonderful loving care Riley Children's Hospital provides to thousands families a year. Of course we will not forget our Dad's that help make the world go around on Father's Day and be prepared for a special treat celebrating a Riley Dad.  You will understand why being called a "Riley Kid" is a badge of honor.

My Riley Story

Personally having grown up with a congenital spinal birth defect, I spent quality time at Riley enduring over 40 surgeries some as an adult, as well.  The journey is a continuous one for me, perhaps looking another surgery in the eyes in the very near future.  I'm 37 so I grew up with Riley.  Riley was a small hospital back in 1981 when my family moved here from Ohio.  The Urology department was in a hallway with only a couple exam rooms.  Within that very small space, however, were exceptional health care providers leading the way medically as a State of the Art department.  The nurses, doctors, medical students, residents eased the minds of the frightened children and parents.  Their empathy and concern helped distract parents and children from some painful procedures and at times news of major surgeries which would be scheduled.

Urology Department

I remember the tile floor.  It had multiple colors and I jumped from one color to another without stepping on the lines.  In the hallway, they had books and magazines too.  My Mom would engage me in "Highlights" magazine to keep me from being afraid.  And another favorite was, "Ranger Rick."  It was a basic set up with brilliant doctors who changed my life.  After many procedures over the years, they made me continent, and in that, confident as well!  Many of the Urological surgeries are life saving procedures no one thinks about.  Entire urinary tract are reconstructed to save a childrens' kidneys and lives.  It's truly phenomenal!

Thank Your Riley Urology for Making me Continent!


Orthopedics and Neurosurgery

Wow, I spent so much time in the Orthopaedics department as well.  Sacral Agenesis (my congenital spinal anamolie) is multi-faceted, impacting the body holistically.  In order to walk I have had many corrective procedures for bilateral club feet to straighten my feet and ankle fusions (surgically fuse the ankles at 90 degrees) and muscle shortenings and lengthenings and more. What I loved was my Doctor and the Nurses.  This department was around the corner (in the 1980's) with a small waiting room and several examining rooms. My doctor was so gregarious and confident.  I idolized him really.  Before surgeries he used marker to draw the bones on my legs and "diagram" what he was going to do so I could visualize the procedure.  It helped me become a part of the process, as a child.

Out of the Gates to Walk! 

Hospital Stays

There were many long hospital stays over the years. Before the hospital expanded to different wings per illness, siblings were not allowed to visit for fear of spreading germs to the immunocompromised patients.  I went long times where I missed my twin brother and older sister.  However, the nurses were so wonderful on the floor.  When I was able to get out of my bed, I would sit at the nurses station and could call my Mom.  I was quite grown up!  Even when I used the call button for the nurse, I made my request using proper medical terminology and very politely.  They tirelessly cared for all of the children!  To this day I still can picture some special nurses I've had over the years and am so thankful they came into my life.  To lift everyone's spirits, I would wear a clown nose and plastic Spock ears when the nurses came into my room.  I did this even when I was tired and in pain.  It put a smile on all of our faces and broke the tension.  If you don't laugh you cry.  And laughter is a great release!

College Years And Beyond

As I went to college and tried to "forget" my surgeries and all that I had been going through, I was abruptly reminded.  Suddenly I was unable to walk with indescribable pain.  Ironically enough, I had never had a spinal surgery my entire life until I was 21.  This is where Orthopedics and Neurology worked together in many surgeries.  My spinal canal collapsed on the spinal cord compressing it so much that it was damaging the cord and my ability to walk and other organ functions.  After my first Laminectomy (remove bone from around the spinal cord giving the cord room to swell without injury) it was wonderful.  Immediate relief and regaining of strength.  I had about 5 of those and then 5 tether cord releases where my neurosurgeon surgically corrects an abnormality with the nerve roots.  This keeps me out of pain and walking as well. 

Thank You Riley for Taking Care of Me. It makes me Happy!

What Can You Do? 

All Riley Kids grow up quickly seeing life and death as a child.  It molded me into an empathetic, independent, happy individual who wants to pay it forward and help other children and families struggling.  Join me in honoring Joshua's fight to live in just 4 short years.  He's endured many long, arduous surgeries at the hands of Dr. Cain and Dr. Rink at Riley Children's Hospital in Urology. 

Remember to engage in activities which make you happy and share the heart beats during that activity with Riley Kids.  It's sharing compassion that gives families hope when they see the number increase, knowing that so many people have done something positive in their honor.  The weather is nice now, if you want to bike ride, walk your dog, play Frisbee, or read, do yoga, spend time laughing with friends, volunteer.  Make doing positive activities a part of your daily life and it will become a habit.  Share that happiness with Riley Kids who can view that as a giant get well card from the world.  Log your Happy HeartBeats at http://www.gtwyh.org/rileyurology/grouphome.asp.

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Will you join me in generating excitement as Joshua's Ride For Riley approaches?  Spread the word.  You can log happy heartbeats wherever you are located by doing a  positive activity that day.  It will connect all of us.  Read Joshua's story at http://www.firstgiving.com/fundraiser/keith-krimmel-1/keithkrimmelsfundraisingpage to donate to Riley Urology who saved Joshua's life and gave his family hope!  This is one of many, many stories of survival at Riley including mine.