Ok, this one of only a few serious posts I will ever make. They will be few and far between, I can assure you!
Five years ago this month, my son was being treated for swimmer’s ear. Over a course four weeks, he had been in and out of the Pediatrician’s office several times, each seeing the Nurse Practitioner, and each time being told to “let the drops do their work”. She was unconcerned. I however was very concerned. I decided to find an ENT and schedule an appointment. After visiting the ENT, he had my son learn how to vasalva, a technique used primarily by divers of pinching one’s nose shut while pressing out as if blowing up a balloon in order to equalize the pressure. A couple additional weeks pass and still no improvement. Luckily fate stepped in.
A couple years prior my son had a neighbor who was autistic. The boy would walk his dogs along with his father and would stop at our yard. Conor would run out and the two would play on our trampoline. His dad and I would chat a bit, but I never got to actually know him well as I had 2 other children demanding my attention. The gentleman would sit patiently watching his son play with Conor. I believe he was happy to watch his son interact with Conor, who was grateful to have someone to play with, and truly liked the boy. He would also sit with the boy in school during lunch time, so they developed a friendship that would later be what seemed to me, a divine intervention. I was then pregnant with my 4th child, and the boy moved on to middle school. I did not see them for sometime, and seemingly the brief friendship and visits had come to an end.
Back at he EN. He seemed frustrated and unable to help. Ears after all were not his specialty. However his partner was great with ears and he set us up to see him the next day. The office was small but pleasant. The TV on the wall showed a looping video of an interview with a Dr. discussing allergy treatments, along with several patients attesting to the practice’s amazing treatment and credentials. Maybe we were in the right place. Conor is called back by the Doctor himself. He is friendly and genuinely pleased to meet my son. He looks in his ear with a machine. He vaccums out the fluid. He doesn’t seem as upbeat. He schedules and MRI. We get it done immediately. Back in the office he is straightforward. CHOLESTEOTOMA. My son has a disease and a cancer-like (grows and feeds like cancer, but cannot be treated like cancer, is not cancer, and can only be killed if very cell is removed) tumor growing inside his ear. The condition is often genetic, but in rare cases, like Conor’s it is bacterial born. Grown from swimmer’s ear that did not drain and was treated with a “don’t worry about it, it will clear up” attitude. The only cure is a surgery. An 8 hour surgery in which his taste nerve will be cut and he is at risk of facial paralysis because the main facial nerve is involved in the surgery.
The Doctor was upset. I could tell. He was kind and loving and wanted to do his best. The Pediatrician suggested that we find a different ENT through the children’s hospital, but I felt comfortable with our DR. Something made us stay with him. A few weeks later we were to lose out health insurance. This was devastating. The ENT changed his vacation plans to accommodate the surgery before the New Year so that we were covered. How was all this happening so fast? The disease was life threatening. If he did not have the surgery, eventually the growth would eat through his skull. He would die from a brain abscess or meningitis.
Day of. It was the longest 8 hours ever. The doctor came out and the first thing he did was to ask how WE were. “How are WE?” I asked. I told him that HE had just stood in surgery for 8 hours. He smiled. He then told us that he was “sorry that it took so long, but he wanted to re-route his taste nerve instead of cutting it so that Conor wouldn’t lose his ability taste.” I was shocked. He was apologizing for this? He had avoided damage to his facial nerve. The disease was gone. In 6 months he would HAVE to have another surgery to repair the damage. I wanted to hug him. Why was he SO comforting? He made us feel safe.
The next morning Conor actually walked into his follow- up appointment. The equivalent of brain surgery apparently doesn’t warrant a hospital stay in Hartford. He was walking pretty well. Unstable, but well. The Doctor was very pleased. He was so smiley. “Why am I so comfortable with you?” I Blurted. I hadn’t meant to say it aloud. “You don’t remember me do you?” He asked smiling. He was familiar, but I was blank. I thought it was because he looked just like Mandy Patinkin in The Princess Bride. (Someone else did as well, as he has a side by side comparison on the wall in the hallway) “I used to walk with my son in your neighborhood. When I saw that it was Conor, there was no way anything was going to happen to him on my watch.” Fate. Intervened.
I would be here all day if I were to continue this story. Conor was 13. The disease returned, and upon his second surgery it was removed again, but by then the hearing had been destroyed. All healthy bones had been devoured. Two failed implants and 4 surgeries later, Conor is deaf in his left ear. His scarring is so bad that he has to go back every 6 months for injections or steroids to relieve pain and swelling due to nerve damage. He has lost the ability to serve in the military. School was screwed up due to the lack of hearing and the chronic pain. He developed issues with antibiotics.
As a child Conor had never had ear issues. No infections, no pain. However he should have had tubes for drainage. There had been no warning like those that have children with chronic ear infections. If he had been given tubes as a child this NEVER would have happened. Conor had failed two hearing tests as a child. This would have been due to a buildup of pressure from fluid. However both pediatric offices (Charlottesville and Syracuse) AND a school Nurse’s office (PA) attributed it to equipment failure. He was after all a kid, who didn’t understand what he was supposed to be doing during the test. He had speech issues until age 4. How long was this a problem that NO PHYSICIAN picked up on? The answer is YEARS.
My advice is to be proactive with your children’s health. Trust your physicians but ASK QUESTIONS. If a test fails, demand it again and again until they PASS. Go somewhere else and be tested AGAIN. While in treatment, don’t sit and wait for weeks for something “to work”. Chances are that person treating is either overwhelmed, or frankly it is possible that they are over confident, and that is more dangerous. If your child, no matter how old, complains of their ear feeling plugged for more that a few days TAKE ACTION!!!!!
Please visit my blog at kitryn.com – Don’t attempt to find actual useful information on there. However if you need a giggle…
