A nasty virus has hit Errol hard and he's been admitted to Duke Hospital. Errol is seriously dehydrated and the docs are reviving him with a tsunami of fluids.
Errol came home from Duke Hospital on two different antibiotics that have to be administered intravenously every eight hours. Not to mention his other meds, his food, and his nightly pedicure! OOOOOOOOOOOOOO.
When Cary was pregnant with Owen we couldn’t wait for her to have the baby. The birth seemed like the goal, later we realized that birth was the starting line, not the finish.
We were desperate to get out of Duke Hospital with Errol, but as soon as we were discharged we realized that we were about to start another race. With this race, not only were we entered in a decathlon, we were wearing ice skates.
The events in the Errol decathlon include the iv flush, the diaper relay, the downhill sleep, and the ever popular baby lifting. It’s hard work.
The thing they left out of the future parents of disabled kids PowerPoint presentation was that we would have to be far more than just parents. We are Errol’s nurse, accountant, social worker, advocate, doctor, physical therapist, personal trainer, and beautician.
It's a non-stop job and it doesn’t pay very well...unless love is your currency. And that makes us rich beyond compare.
When your life is topsy-turvy, strange things can make you happy, Last week, we actually celebrated when Errol was diagnosed as having had a seizure. After all, Errol’s seizure wouldn’t leave any long-term negative effects, and now that it was over, Errol could get back to the business of running the country. The only problem was that the underlying cause of the seizure remained undiagnosed.
While Owen and Roman were feeding the giraffes (they really were, and it’s much safer than feeding the lions) I was preoccupied with the Little Man. By the time we got back home, Errol was fading, and although he was completely exhausted, he lay in his crib moaning and wouldn’t fall asleep.
We knew something was terribly wrong, so Cary bundled Errol up and rushed him off to visit his amazing pediatrician. Errol was whisked into a room, and Dr. Hunsinger took his vitals, examined him, and told Cary that Errol was running out of oxygen. She made a call to the hospital and asked them if we could see a cardiologist. She was told the clinic was closed and that we would have to go back to the emergency room (where the week before, residents had been sent us home with an incorrect flu diagnosis).
But we didn’t really have any options, so Cary rushed Errol to the ER and I dropped Owen (poor resilient boy has learned to live with a certain amount of uncertainty) with his grandparents and raced over to join Errol and Cary. Again, we saw resident after resident who asked us the same basic questions and then diagnosed the flu, “It’s really going around!”
We asked to see a cardiologist, and finally one materialized. I told the cardiologist that Errol’s pediatrician thought he might have a pulmonary embolism or some kind of infection. “That’s impossible!” she replied.
Without giving Errol a physical exam the cardiologist informed us (as we had been told the week before) that Errol had the flu.
“You are saying that his heart is fine?” I asked. “That there is nothing cardiac going on with Errol?”
“That’s right.” She said. “His heart's fine. He just has the flu. Let’s keep him here overnight and watch him.”
“What are you going to watch him for?” Cary asked.
“Well,” the doctor said, “We just want to watch his sats and take his vitals to make sure he’s ok.”
“Errol is sick!” His mother proclaimed, “He doesn’t need to be kept up all night by nurses taking his vitals, and alarms going off.”
“Well, we can just turn his alarms off.” the doctor said.
“But, if you turn off the alarms, you won’t be watching him! I thought that was the whole reason you were keeping him here.”
“Well,” The Cardiologist stammered, “If you are just worried about losing some sleep-“
Cary is one of the kindest, sweetest people in the world. She is not worried about losing sleep. For four months she spent almost every single sleepless night in the hospital to keep her child alive. Suffering through needless alarms, beeps, buzzes, dropped breakfast trays, midnight blood draws, thoughtless nurses who want to chat at three a.m.! She has suffered years of insomnia from worrying about Errol. She gets up at 1:30 every Saturday morning so she can bake until six a.m. when she goes to the farmer’s market to sells baked goods so she can pay off our child’s enormous medical bills. I won’t quote what Cary said to our ex-doctor, but suffice to say, we left the emergency room and headed home to “get some sleep.”
The next evening, Errol was doing worse, and although it was long after office hours, Dr. Hunsinger told us to come to her office. When we got there, Dr. Hunsinger was beside herself. She knew that Errol didn’t have the flu. She was sure that Errol’s problem was with his heart. She diagnosed endocarditis and was furious that the cardiologists at Baptist Hospital were not doing anything for Errol. But what options did we have?
By now it was seven at night and her office was long closed. She feared for Errol’s health. There was one last resort. An old friend and medical school classmate happens to be a world-class pediatric cardiologist at Duke Hospital. She picked up the phone. As she described Errol’s situation, he grew concerned. Could Cary and Errol come to his clinic first thing in the morning?
The next morning, the brilliant and compassionate Dr. Ronald J. Kanter, saw Errol, ran a few test Baptist hadn’t run, and quickly diagnosed endocarditis. (If you saw Errol and read the symptoms of endocarditis you would too!) We were admitted to Duke Hospital and began the six-week regimen of antibiotics we are now faithfully administering at home.
Errol is getting better each day and we have switched his cardiac care to Duke Hospital.
Last Monday I got a call at work to come pick Errol up from school. He had passed out. As soon as I laid eyes on Errol I knew that something was very wrong. He was white as a sheet, listless, and staring blankly into space. There was nothing of the smiling, cooing, laughing Errol. I put Errol right into the car and headed straight to Dr. Hunsinger’s office. As I drove, Errol slumped further over into his car seat. His eyes were open, but they were blank and unresponsive.
I tried to rouse Errol by opening the car windows and letting the cold air blow on him. But as the air blew across his blonde hair, Errol just sat hunched over in his seat. Barely there.
The open windows weren’t rousing Errol, so I honked the horn to try to startle him awake. Then I turned around and yelled in my meanest teacher voice,
“Errol!”
“Errol!”
“Errol. Wake up!”
He didn’t budge.
I looked over my shoulder for signs of life. I swerved between the lanes. Errol remained in his slump. I panicked. I thought about turning around and driving to the emergency room. My mind and my heart were racing. I didn’t know what to do and I couldn't tell if, down under his big coat, he was even breathing.
I screeched to a stop on the shoulder and ran around the car to check on Errol. I tapped him on the cheek and then felt for his pulse. It was there! I breathed. I looked down at Errol. I hurried back behind the wheel and pushed on.
As we burst through the door of the doctor’s office, the nurses took one look at Errol and rushed us straight back to Dr. Hunsinger.
Tragedy had been averted. I had thought I was going to lose my boy, but now he was going to be just fine. Or so it seemed…
