Saturday, April 10, 2010

Preparing for surgery

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.


Oh, my gosh. I'm glad that you've shared this with us so that we, too, can offer our support, our prayers, our well wishes and commiseration. How worried and anxious you must be -- but how good that you are acknowledging it, too. I will light a candle for Ben and wish for his surgery to be simple and effective, for his healing to commence quickly and for his pain to be eased. And to you I will wish for peace and affirmation and strength and courage.

Best of luck to you and Ben. We have lots of experience with hip spicas...One thing that we found really helps is to use a beanbag chair with some kind of tray table or lap desk for daytime use. The beanbag chair will allow him to sit up somewhat and use the tray to do stuff. Better than lying in a bed all day! I hope the surgery alleviates his pain. It is so hard to have a child go through surgery. I'll be thinking of you all.

Hi Elizabeth -- Thank you for your beautiful message. I really appreciate your lighting a candle for Ben. That's a lovely act. Thanks also for your well wishes and prayers -- and the strength and courage! Hugs, Louise

Oh Louise, I was just thinking of Ben this morning and his upcoming surgery. To read about the 10 faces and Ben's reaction made me actually wince. That's hard to take and I can only imagine how difficult this has been.

You're a generous soul, helping us both by your blog and your personal touches too -- please know that the boys and I will be sending all our well wishes for Ben. And tight hugs for you too!

Hi Ellen -- thank you very much for your message! The beanbag sounds like a fabulous idea and I'll see about getting one. We were surprised that other than the child life specialist, no one could really tell us what to expect or how to prepare.

Were you and/or your daughter able to wear regular clothes over the casts -- or do you need to get larger clothes?

Are they hard to sleep in?

Any other practical tips would be greatly appreciated. Thanks so much! Louise

Louise - I will email you later with my full "spica cast" tip summary! A lot depends on whether they cast him partially sitting or flat but I will send you all the info I can dredge out of my brain later tonight when the kids are in bed!

Louise I am so sorry you all have to deal with this.
I will tell you what my most helpful friend told me - try the white wine!


All I can do is give you some virtual hand holding...for you and for Ben. Hang in!