For those of you following along at home, it’s been a busy couple of weeks: as Gabriel’s toes worsened, I turned the advocacy up to 11, print and broadcast media were called in… Two things happened: our referral appointment to the Orthopedic Surgeon in Victoria was fast-tracked for early December; and Island Health figured out that it really did make sense to coordinate Gabriel’s existing dental surgery in Nanaimo (December 12th) with the procedure to treat his toes, then went on to find surgeons who may become willing to take it on.
Things were looking hopeful. Except that Gabriel’s toes were still getting worse. More infection and bleeding. Daily limping. “Sore toes. Hospital, bye bye toes.” When he was in so much pain that I could barely change the dressings, that was it. 20 days from the potential Nanaimo surgery date. 20 more days of this. My sister helped with a perspective check on Friday: “If you were in that kind of pain and could wait 20 more days, or you could go to a hospital emergency room and get relief tonight, what would you do?”
No hesitation. 12:30 p.m. ferry Saturday, through BC Children’s Hospital Emergency Department Admitting and Registration by 4:30, and in a private room by 4:35. The hospital linen smell took me back through the years – many years – I’d spent in that building with Gabriel throughout his life.
We talked to the nurse. There were arm-hugs and glow-fingers. We talked to the doctor. An OR and general anesthesia on a Saturday night wasn’t going to happen so he pitched a kind of waking sedation, Ketamine (common in the States, where he was from). There were a few Laurel & Hardy moments involving a missing nitrous canister, Emla cream, freezing spray, shift change, questionable use of bubbles, and a revolving door of IV technicians – all forgivable. We waited. We played with the iPad. Gabriel made faces in the reflection of the sliding glass door. He repeatedly flashed passersby.
Once a small army was lined up, they pulled the trigger and in ten minutes Gabriel’s toenails were removed and bandaged. Ten minutes. He came back to earth and there was some barfing (not an uncommon side effect) so they kept him for a while. The nausea was persistent but Emily’s house was only five minutes away and I could manage it there; we were eager to get out, to free up the room for someone who really needed it. It was 10:30. We’d been there for six hours. An issue 18 painful months in the making was resolved during a six-hour visit and a ten-minute procedure that was executed by an ER doctor and a nurse practitioner.
Don’t get me wrong, it’s not over yet; the wounds require intensive care and a long healing period. After an horrific bandage removal in the bath this afternoon Gabriel said, “Toes crying.” Yeah, mom was too. But it’ll get better.
I’m still struck by how quickly we were seen at Children’s, the voice I had as a parent, the respect Gabriel was given as a vulnerable patient – the quality of care we received throughout were exceptional. If I had the choice, we’d never walk Gabriel through another hospital’s doors. (Nanaimo General take note: you have a chance to step up and earn my respect on December 12th. Please don’t blow it.)
Now I’ve got a lot of phone calls to make: cancelling the orthopedic surgeons here and in Victoria; closing the file with Island Health; letting our MLA Leonard Krog know that he can stand down; and updating the media that were kind enough to take an interest in our story in hopes that they could make a difference. I think they did. It didn’t improve our particular outcome, but maybe the next specialist who refuses to treat a special needs child will think a moment. This issue, it’s a big can of worms. And parents, we don’t take this stuff laying down.
Ps: We all have our charities of choice, but if you happen to be looking for a spot to place a Christmas donation, you could do worse than BC Children’s Hospital Foundation.
Toes crying. Aw. I hope G’s toes have a speedy, healthy recovery. What an ordeal for all of you to go through. XO