Last weekend, I was weepy. "I don't have enough courage," was all I could tell my husband. I had no patience and snapped at my kids.
I woke in the middle of the night on Wednesday with a sore throat and panicked. I can't be sick, I told myself. I CAN NOT BE SICK. I went to the washroom and grabbed an anti-bacterial mouthwash I'd been given for a prior dental surgery and gargled like a maniac.
I kept eating. Even when I wasn't hungry. I'd go downstairs and take out the lemon loaf and cut myself more slices. I munched on smart popcorn and bars of chocolate. When I'm eating my mind is busy. I can pretend I have something to do and really I'm not worried about the surgery my son is having this Tuesday.
Ben has had more than a dozen operations, but many of them were minor.
His surgery on Tuesday is to remove two benign growths of bone – one sticking out of his knee, the other on the inside of his hip. Both are painful and the one in his hip is pushing it out of of the socket, causing him to limp. We carry him up stairs on our backs now. The knee surgery is straightforward, but the hip one is complicated. I'm not sure how they take out the hip bone so they can excise the growth on the inside, then put it back in, and I don't want to know. The OR is booked from 10:30 to 5, which seems like an awfully long time.
He'll wake up in a spica cast the full length of one leg, around his trunk, and possibly down part of his other leg and he'll be in bed for six weeks, till the cast comes off. This wasn't clear to me until we met with a child-life specialist who came to prepare Ben this morning. I'd been told he couldn't put any weight on his feet, but no one had explained that in practical terms, he'll probably be propped up on a medical bed, unable to use a regular toilet.
Ben will be at SickKids for three days after his surgery. He could go to Bloorview as an inpatient following that for a number of weeks. "When home?" he keeps signing, and I didn't have the heart to tell him about the potentially long stay at Bloorview. "Three days at SickKids," I said, "and then you may go to Bloorview, or you may come home, we'll have to see." It makes me cry to think of him out of his comfort zone in hospital when he can't speak and advocate for himself. I'm hoping we may be able to get a medical bed and other equipment into the house (did I mention we live in a house on a hill up 30 stairs?).
The child-life specialist showed Ben a chart with a row of 10 faces. On one end, a happy face indicated no pain, and on the other, a distraught and crying face indicated extreme pain. When asked to rate the pain in his leg, Ben surprised me by immediately pointing to the most extreme of faces, sad and crying. He's been asking to have his leg "fixed" for months. For a while we were giving him Tylenol every four hours – as directed by a pain specialist – but it didn't seem to have a noticeable impact.
The main goal of the surgery is to alleviate pain. There's always a chance that the boney tumors will grow back. And he may need hip replacements in the future. Ben has pointy bones instead of balls at the end of his hips. When D'Arcy saw them on an x-ray, held up against a picture of a typical kid's hips, he couldn't fathom how Ben walked.
D'Arcy and I had a "black humour" moment the other day. We imagined the surgeon coming to us in the waiting room mid-operation to say he'd discovered something unusual. This happened when Ben was having a surgery to widen his nasal passages. The doctor came out to tell D'Arcy that Ben had anatomy he'd never seen before. He was baffled and said he wouldn't touch the extra tissue he was referring to. Anyway, there's always a fear lurking that surgeons will go in and discover something so structurally unusual that they can't do what they intended, or it doesn't turn out the way hoped.
"I think we'll have to amputate" we imagined him saying, and we laughed, because in a bizarre way nothing surprises us anymore.
Note to self: Try the meditation tape.