She was round-faced and giggly, with big brown eyes that squinted up at us in the sunlight under her blondish brown fluffy hair. She sang as she played, totally aware of the things she needed to master before kindergarten in the fall. She practiced tying her shoes with her tongue sticking out, just as her father does when he concentrates. She took a kids’ acrobatics class at a local circus school, charming everyone with her huge smile and bulldog energy, half the size of the other four year olds and twice the personality. Her voice sounded like a sped-up record — high and squeaky.
She was the mascot of her older sister’s class at elementary school, and teachers who knew Sammi would be coming as a student in the fall would wink at her as she and I walked through the hallways to volunteer or to pick up her sister. Her preschool was less than two blocks from the elementary school, and I found myself in a rhythm I could finally count as lucky. This is a good life, I often thought to myself. Next year, it would be easy — both girls in one school. For five days a week, five and a half hours a day, I would have time utterly to myself to work, manage our home, and maybe even volunteer in their school.
It would have been perfect, except that Sammi was still unable to function without a proton pump inhibitor (PPI). Take away her reflux medicine, and the gagging and coughing increased dramatically. Even on it, she still made a funny sound several times a day, after which, if asked, she’d matter-of-factly describe the last food she’d eaten rising back into her mouth.
Her pediatrician laid down the law: at four-and-a-half, Sammi needed to see a gastroenterologist again. She shouldn’t have infant reflux anymore.
We called the practice associated with the big children’s hospital in our area and were assigned the one doctor whose name we’d heard before. The rumors weren’t flattering — she was described as cold, bordering on rude, and very dismissive of parent input. A friend had told us this doctor insisted, over the phone, that she mimic the sound of her daughter’s retching so that the doctor could determine if it was really retching and not something else. Still, we saw this visit as a formality, at most a chance to get a more appropriate prescription for Sammi. How much time would we really need to spend with this doctor, anyway?
Unfortunately, this doctor was unwilling to talk about medication. “She shouldn’t be on a PPI anymore,” she told us. “I need to scope her.”
Scope her. It sounded vaguely alien to me — like probe, maybe. What she meant was that Sammi would undergo an endoscopy, to take a look at her esophagus and see what was happening in there to cause so much reflux. While they were in there, Sammi’s old otolaryngologist — the same one who had diagnosed her strange cardiac anatomy more than three years earlier — would perform another bronchoscopy to see if her trachea had opened up further.
This would make the fifth time I’d stand at Sammi’s side in an operating room and sing to her until the anesthesia knocked her unconscious. It would have been the sixth if they’d let me in the cardiac theater before they repaired her aorta in 2006.
This time, though, Sammi was a person. She wasn’t a baby or a toddler. She was four, and she talked with me, and we planned to open a restaurant together one day called “Sammi’s Restaurant: It’s Free!” She held my hand while we walked in a circle from home to preschool to her sister’s elementary school and back. She was looking forward to turning five, when she’d be allowed both to chew gum and to go to kindergarten.
It was happening again. It was all happening again. And now it was happening to a new little friend.by