Wednesday, July 29, 2009

A Day In the Life

Today was supposed to be our relaxed day this week - no therapies, no appointments. But when I saw Collin wiggling every time the pump ran during his morning feed, I knew the gig was up. I uncovered him and, sure enough, the feeding tube had somehow become disconnected from his port and his whole feed had flowed all over his stomach and the blanket and the boppy and the pack-n-play. And, of course, this was the feed during which I had just given him all of his meds. Since I didn't know when it had come out, I had no way of knowing whether he had gotten his Topamax, so I had to call the neurologist to discuss the risks of missing Topamax versus the risks of a double dose. When they finally called back (call backs from doctors' offices will be a post for another, less frustrating time) they told me to give a half dose and informed me that we cannot move our EEG scheduled for tomorrow. So that means we'll spend most of the day at the neurologist's office then drive up to Cincinnati for a long day at Cincinnati Children's Hospital for the PET scan. Not that I mind. I would spend all day every day wherever I needed to if it would help Collin, but exhaustion triggers spasms and I just hate dragging him from one strange, stressful, poking, prodding place to another.

Luckily, we'll be on the farm this time tomorrow night, with Nana and Grandad and Grandma and Brian and Aimee and Steve and the cows and the trees and the sweet air and the ridge tops. If that doesn't counteract some stress, I don't know what will.

1 comment:

  1. I know you're in the thick of things right now, but I wanted you to know we're thinking of you.
    love and prayers,
    the Williamses