[Vinny Randall Davison] Yet Another Jouney Begins...

[Vinny Randall Davison]

Well, where to start?  I guess from the beginning would be most logical.  September of last year, my parents were giving me a bath and noticed a bump/bulge right next to my belly button.  We weren’t concerned, thinking it was most likely a small umbilical hernia, but Mom took to me see my pediatrician the next day.  My doctor was slightly more concerned, saying what she felt was not “presenting as a typical hernia” so she sent us to get an “emergent abdominal ultrasound.”  Pretty easy test if you ask me, the wait was the painful part!  The next evening my doctor called and said the radiologist who read my ultrasound couldn’t tell exactly what was going on and classified the scan as an “unidentifiable mass.”  She recommended going to the ER right away for a CAT scan. 

Let’s be honest, at this point I could see my parents were a little freaked out, but pretending to maintain their composure.  After a five hour adventure, including an IV, blood tests, and a CAT scan the diagnosis was………………..an umbilical hernia.  Unfortunately, it was the incidental finding that has me writing this entry today.  The scan showed my right kidney was significantly smaller than my left.  My dad has imaging software on his computer, so we got a copy of the scan--we are talking walnut to watermelon difference here people.  Obviously, that’s not normal, so it resulted in a follow-up with a Pediatric Urologist. 

Fast forward three weeks and I had been through some difficult testing, a VCUG (which tests for kidney reflux—came back negative/normal) and a Mag-3 Scan (this was ridiculously horrible…which frankly I blame on the staff who were rushed and frantic that day).  The Mag-3 scan showed that my right kidney was producing at 18%, while my left was picking up the remaining 82% function.  With these results, I was referred to a Pediatric Nephrologist (kidney specialist).  Our original appointment was for April (he is extremely hard to get in to), but after reviewing my chart, he called and asked me to come in two weeks ago for a consultation.

My Mom says Dr. Zaki (Nephrologist) and his NNP Laura are the best team of doctors we have encountered to date.  They are positive, informative, realistic, and spoke to my parents as what they are—my primary caregivers and the people that know me best.  With that said, the news was less than ideal.  I have been diagnosed with Solitary Kidney Disease.  What this means is that my right kidney is dead…since the initial testing it has continued to diminish in function and size.  Now, there are a lot of people that live with one kidney.  They may not be able to drink as much Miller Lite as their buddies, take Advil, or participate in contact sports, but they live great lives.  We hope this is my fate…what we don’t know is why my right kidney is dead or if this is a degenerative condition that will affect my left.  What happens if I start to lose function in my left kidney?  Well, to quote my Mom, “We are up (insert naughty word) creek without a paddle.”  I would be looking at dialysis and a kidney transplant.  For now, I have to stay especially hydrated, track my blood pressure, avoid contact sports (uggghhhhhhh!!!—maybe tennis doesn’t look so bad), avoid Advil, and get my urine and blood tested to make sure my protein and creatinine levels stay within a normal range. 

Last week, I had my blood drawn (didn’t even flinch) and had a renal ultrasound.  The ultrasound produced nothing additional and my blood work was fine.  My Mom is working on tracking down my 20 week ultrasound to see if this is something that happened during the development of my kidneys (this would be best case scenario, because most likely it would mean the condition is reserved simply for my right kidney).

Everyone has taken their typical stance on this; Mom smiles and tries not to cry (but fails), Dad focuses on only the positive, Marlee sits there like nothing is happening, and I just want to go outside and play!

 

**PLEASE NOTE:  We are not telling Vinny anything is wrong with his kidney, and would appreciate no conversation regarding this subject in his presence.  We'll talk to him about what it means to live with one kidney when he is at an appropriate developmental age to understand the situation. 

Preparing for my renal ultrasound!  John said I was the best kid he's tested in 10 years :)

Donut date with Mom after my tests.  Basically, I am a pro at this now!

 

 

In other news...

Grandma Jane sent me a Spiderman outfit for Valentine's Day.  I was real excited!

I don't know what you wear to Wal-Mart, but Dad and I wear matching head bands!!

Marlee is 3 months old!

...and our photo session went from that to...

...this.  Seriously, I'm getting a sign for my bedroom door that says "Hang your drama here before entering."  She needs to get a grip sometimes! 

 

Have a good week!

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Posted By Vinny Randall Davison to Vinny Randall Davison at 2/11/2014 01:15:00 PM