We took our itty-bitty Bronx to a children’s hospital last week to meet with a pediatric urologist.
It was a long trip. Traffic was crazy and my pink Garmin (named “Molly” after Molly Ringwald from Pretty in Pink) got us lost by directing me to take a very unnecessary exit off of the interstate. Once I finally figured out where I was going (again, no thanks to “Molly”) I discovered that parking was an even more horrendous mess…and my nerves were so frazzled I actually passed up the opportunity to get it validated.
That was a twenty-two dollar mistake.
Before our meeting with the urologist, we had to take him to the lab for another Cystic Fibrosis sweat test. The first one he had done a few months ago came back inconclusive, so it needed to be repeated.
Once again, my little guy was hooked up to electrodes. Then he sat for about five minutes while an electrical current was sent into his arms to make him start sweating.
This part made me nervous for one obvious reason…they were hooking my baby up to electricity. The straps and electrodes reminded me of the electric chair.
And who wants something that resembles “Old Sparky” wrapped around their child’s arm?
That was bad enough.
They had to do both arms.
After that, we had to wait for thirty minutes with Bronx’s arms wrapped to catch the sweat for testing.
Surprisingly, Bronx didn’t mind having mummy arms.
When we first arrived at the hospital’s lab for the sweat test, the nurse called over to the urology department to let them know that we would be getting there late (The genius that scheduled the two appointments booked them an hour apart, so there was no way we were going to make it on time). We arrived at the urology department thirty minutes late, and were immediately informed that the doctor would not be able to see us because we had shown up past our scheduled time.
Uh, pretty sure that’s what the phone call from the nurse was for. Hey, Urology! We’re held up in labs and it’s not our fault!
I tried to explain. The girl at the front desk said she would speak to the doctor to see if we could get squeezed in.
At this point, I was feeling pretty desperate. We had been waiting for six long months to see a pediatric urologist, and it wasn’t like their office was just down the street. We had traveled to get there, and I was almost in tears just thinking about the possibility of being sent home without seeing this doctor.
We have no idea what is going on with our little boy. What if it’s something that can’t wait another six months to be discovered?
Here’s where things get strange. Just before the girl at the front desk goes back to speak with the doctor, she pulls up Bronx’s information in the computer and starts asking me questions.
Most of which were fairly routine. Except for when she tried to verify the date that Bronx had seen a kidney specialist.
Bronx has never seen a kidney specialist.
Upon learning that, the urology doctor decided that there was no need to see Bronx.
We were told we need to see a nephrologist. Not a urologist.
Fabulous. Six months goes by and all we’ve been doing is waiting to see the wrong doctor because someone put inaccurate information in my son’s chart.
I should have been livid. But the doctor, and a nurse who works in the kidney diseases department that I spoke with afterward to try and schedule an appointment both came to the same conclusion that I did after looking at his chart.
The slow growth and the hematuria could be related. And it could be a kidney issue.
It was nice to at least have my instincts now validated by two medical professionals, even if my parking wasn’t.
So now we have an appointment with the kidney diseases unit. That same day we are scheduled to also have more lab work done. The nephrologist has ordered a whole new battery of blood tests and urine samples.
This time I advised the patient scheduling department to book the appointments three hours apart. They tried to convince me that an hour and a half would be an adequate amount of time to complete the labs and get over to the kidney disease unit.
Obviously, I know better.
That’s not the only thing that I learned during our visit. I also was given some very good news over the phone during our drive back home.
My blondie bear, Bronxie, does not have cystic fibrosis.