It’s amazing how your vocabulary expands when you have a kid with special needs. When Oscar was in the NICU I remember feeling like I’d been thrust into this new world of words that I didn’t comprehend…hypotonia, hyperphagia, hypogonadism…and then later I was met with an onslaught of developmental terms: processing speed, receptive language, motor planning, sensory integration, apraxia. I could go on and on.
By the time Oscar reached kindergarten and had endured medical procedures, cognitive testing, occupational therapy, physical therapy and speech therapy, I had started to casually toss around terms I’d picked up from the doctors and therapists we saw with dizzying frequency. It had been a while since I’d picked up any new ones, but on Wednesday I added a new word to my special needs mama dictionary – spirometry.
In order to be cleared for surgery Oscar had to have a spirometry test to check his lung capacity. He blew into an apparatus that measure the volume of air he was able to inhale and exhale. The nurse gave him three tries. Watching him breath into the tube with his nose plugged I was concerned – he didn’t seem to truly fill his lungs and when blowing out he stopped, it felt, partway. What would these numbers mean and would it preclude him from having surgery?
I admit I’m still not 100% certain why he needed this test. It has something to do with post-operative recovery and his risk for complications. I was right though — his numbers weren’t good — he scored about 60% of his predicted capacity. But the pulmonologist reassured me that she didn’t think the test was indicative of a problem for Oscar. Taking into account his motor planning, his inability to understand what it meant to fully fill his lungs and his inability to fully expel the air, she thinks his actual capacity is closer to 90%. Apparently, I learned, when the thoracic spine is particularly curved it can interfere with the lungs. It’s obvious, I’d just never thought about it. But looking at his chest from all sides and his spine xrays from December she didn’t think that was the case for O.
We’d never met this pulmonologist before but like our pediatrician and our endocrinologist (and many others) she is the kind of doctor who partners with parents: she listens carefully and considers the information we share. In our case, I brought pages copied from the Prader-Willi syndrome medical booklet with cautions regarding anesthesia, narrow airways and aspiration. After reading my highlighted paragraphs she felt that Oscar, based on physical exam, careful scrutiny of the spirometry results and, quite honestly, his weight, was in great shape for surgery. And she had no concerns for his post-operative recovery. I was relieved.
She also asked about hyperphagia. She needed to know — a kid who might consume unauthorized food might put himself at greater risk for complications. But she used the medical term, not the layman’s term, and Oscar did not pick up on it, for which I was extra grateful. Physicians who respect the need for sensitivity around these topics show that they recognize the complicated dance we parents engage in every day.
And so another hoop jumped through on our way to February 8th.