Brian and his doctors, 7 specialists and the local pediatrician specifically, have played an integral role in maintaining Brian’s health with great care and compassion. These specialists include: an otolaryngologist, opthamologist, cardiologist, hematologist, hepatologist, orthopedic surgeon, and neuro developmental pediatrician. Whew!! That’s a mouthful and quite the “all star cast”! Brian is pictured here with his orthopedic surgeon, who has been a member of Team Brian for over a decade. It has taken a lot of office visits and a lot of practice over the years for Brian to become comfortable with these physicians and their staff. Remarkably, we have still retained the services of all the specialists that Brian has seen since he was a toddler. Of course, that will inevitably change with the passage of time as these doctors retire. There are also additional specialists along the way who will join Team Brian, like Specialist #8, the pediatric nephrologist that Brian had an appointment with yesterday for the first time. Brian was ultimately diagnosed with viral cystitis, aka, ” The Bladder Blah Blues”. It was the perfect ending to an eventful, scary tale that began over a month ago. Let me explain…
Approximately 5 weeks ago, Brian had some blood in his urine before bedtime on a Friday night.( Why do medical issues always happen on a weekend night?!) It was definitely disturbing to see and totally unexpected. These are the times I really wish Brian could speak and tell us how he is feeling- we could only go by his behavior. Brian wasn’t very hungry that evening (which is a huge red flag in itself) and was somewhat irritable. These symptoms could mean just about anything; maybe it was a flu coming on, maybe he had an earache, etc.,.but the last thing we expected to see was hematuria. Fortunately, we have a local pediatric “doc in the box” that is open until midnight. We brought Brian there and he was diagnosed with a urinary tract infection (UTI) and a prescription was called in for an antibiotic. Two days later, the urine culture came back negative and we were told to stop the medicine.
We were referred back to the local pediatrician, who wanted Brian to give another urine sample. The bleeding episode did not recur and then life got very busy for us for 2 weeks. I had planned on taking Brian’s urine sample to Lab Corp on a particular morning then came the unexpected…again! More blood in the urine that very morning, almost 3 weeks after the original episode. This time we went to the emergency room (ER). A renal ultrasound was done, along with a series of blood labs, and this time the white blood cell counts were extremely high. Antibiotics were started again, then the urine culture came back negative again. Argggh!!! This time, we were told that Brian should finish the antibiotic. We were then referred to the pediatric nephrologist who determined after she reviewed all the ER records, blood labs, renal ultrasound, and a urine sample from yesterday, that Brian merely picked up a virus that had
irritated his bladder ( viral
cystitis). Viral cystitis causes bleeding and can take up to a month to clear from body (hence, the 2 bleeding episodes in 3 weeks).
Three hours at the pediatric urgent care, 6 hours in the ER, several forms to fill out, and a specialist visit later, we finally have resolution and the diagnosis is a simple bladder virus. Don’t get me wrong, I’m very grateful that it was nothing more serious, but we could have definitely done without the exhausting, circuitous route in order to reach this conclusion. Welcome to the world of medicine, which is truly an art and not a science. At least other things were ruled out and Brian’s annual blood labs were done, thanks to Fabulous Versed, a concious sedation that makes all procedures possible without tears. Versed is definitely Mom’s Big Helper, too bad we can’t take a prescription to go and use it for haircuts and other sensory nightmares that Brian experiences. We can only hope that this may be a possibility in the future, lol!
In the meantime, the medical adventures will continue to come and go, as they are part of the Trisomy 21 legacy. Brian has been strong and courageous throughout all of his procedures from open heart surgery to eye surgery. Viral cystitis is small potatoes compared to these major medical procedures, that is for sure! We hate to see our kids go through any test, big or small, but they are often more resilient than we give them credit for. Brian’s strength in his challenges is the stuff that legends are made of. It gives me the ability to carry on when some days even getting out of bed is an act of courage. My son is a hero, a Marvel with Moxie, and always will be. 🙂