You knew there had to be a meltdown, right?
Mine came Wednesday morning and by all accounts was a great success. Go big, or go home, ya know?
On Friday night, Sept. 16, 2016, I fractured my left femur just above Elmo, my replacement knee. I lived in a wheelchair, facing hip-high amputation of my left leg, for about two years while I fought health care bureaucracy, cost-conscious HMOs, and myself to figure out a way to walk again. (Spoiler alert: Elmo won!)
I documented my adventures in remobilization in this blog. They’re awfully self-indulgent, occasionally icky, and probably only of interest to me, but on the off-chance that they help someone else with a catastrophic injury, I’m keeping them together here. If you don’t want to read them, that’s OK; I still love you. If you do, you might want to start from the beginning, on the archive page that lists all posts.
Tuesday, September 20, 8:30AM
Tuesday started out great; I’d passed the evaluators’ can-she-stand-pivot-wheelchair-to-the-bathroom? test, once again opening the world of not-in-the-bed toilets (with supervision). I felt remarkably little pain, and made friends with my new roomie, Sally, a darling grandma type whose big-hearted family welcomed me with open arms.
The pain in my leg took off like a rocket around noon.
Nobody could figure out why my leg hurt so much. Sharp pains on the skin around the incisions, burning and burning and gaining in heat until I gasped “8” when the nurse asked me to rate my pain on a scale of 1 to 10. I’d given my smashed-up, un-morphined leg a “9” on the night of the accident, so this was pretty bad.
They’d remove Hector the Protector brace to investigate… and the relentless hammering would stop. Unfortunately, Hector’s a 24×7 fashion accessory, never supposed to leave my leg until some magical day of healed many weeks hence. After awhile they’d strap him back on and… pain.
Ten hours of that, and my lovely Tuesday shower vanished in a sheen of sweat and fear. It hurt too much to leave Hector in place, but taking him off risked twisting or bending the bone grafts, ruining 5.5 hours of careful jigsaw puzzle repair…and my future mobility.
Finally, around 3AM, I gritted my teeth, powered the bed to a sitting position, and clawed Hector off myself. The pain stopped, and I saw something odd inside the brace: Velcro.
What the hell is THAT doing in there?
I reached around my thigh and slipped out a velcro strap, the one used to attach the ice machine pad to my leg. Apparently it had embedded in the brace and every time they wrapped Hector around me again, it was pressed into my skin, right over the incisions on my upper thigh. An assistant found a second Velcro strap down by my painful knee.
The pain lessened and I asked for help to get to the bathroom. On the way, it spiked again, so suddenly that I slipped. My attendants on either side barely saved me from a fall.
They helped me finish and got me back into bed, considerably shaken.
Wednesday, September 21, 8:45 AM
I awoke to the sensation of icewater dripping into the incision, so real that I groped for kleenex to dry off my leg. Mysteriously, the area was dry.
The sensation increased to a steady firehose flow (which actually felt pretty good). Then, 15 minutes later, it changed. Instead of ice water, it heated up, until it felt as though a curling iron had been laid against my flesh. Maybe 7 on the pain scale.
I’d maxed out on pain meds and the next dose was two hours off. I reached for my sippy cup of ice to lay against my skin, but it was maybe six inches past my stretched-out fingertips.
Hit the call button. Waited. Couldn’t sit up because my back hurt. Couldn’t lie down because my leg became guest of honor at a branding.
Every press of the call button made me feel like a malingering fraud.
Cynthia, you idiot, these nurses are really, really busy helping sick people. Dying people. Are you seriously considering hitting that call button, dragging someone away from a patient coughing out their last, to say, “Excuse me, I can’t reach my sippy cup?”
Mix together one part loss, three parts future-maybe loss, and a heaping helping of pain. Season liberally with terror and helplessness.
Pat, my physical therapist, walked in, and slid my sippy cup within reach. Her casual, unthinking act did me in: Hour-long crying jag that I just couldn’t stop.
I’m sorry. I’m sorry. One little misstep, and now I’m Cynthia the beggar, crying for favors. 54 more days of pressing that damn call button and asking for help…
Pat held up a hand. “Whoa,” she said gently, “What’s going on? You were so positive yesterday.”
“One mistake, do anything that interferes with healing, and I could lose my leg,” I sobbed, “I can’t control what is happening to me, I can’t even reach for a cup. I can’t stop this.”
“You’re used to being in charge?”
“Well, yeah. Of me, anyway.”
“So what do you need to get back in charge again? Let’s work on that today.”
“I need Elmo safe,” I babbled wildly, “I need my leg not to be broken. I need to be out of this damn bed and moving around, going for walks. I need to go HOME.”
“OK. Those are whole projects. What’s the best way to handle a big project?”
“Line it out. Break it into smaller goals, with milestones.”
“Exactly. Let’s start with the low-hanging fruit, take this one little problem at a time.” She gave my tear-sodden body an appraising look, then said briskly, “First, your brace is too loose, and not centered on your knee. It’s got to be used correctly, or it won’t work.”
“Now, there are too many caregivers and nurses in shifts around here to make sure they all know how to do that. So…how will you fix that?”
“I need to manage Hector myself.”
“Right. So I’ll teach you that today. And then I’ll write out instructions and post them on your wall. It’s your job to make sure everyone who looks after you reads those instructions.
But mostly, you are responsible for making sure that brace is really protecting your leg. If it’s not, you fix it.”
We practiced taking the brace off completely, figuring out how to lift my bare leg safely, push the brace under it and center it on my knee. I learned how to secure the straps properly. Smoothed out wrinkles in the pillowcase protecting the bandages, checked for unwanted artifacts like Velcro.
Centering the brace centered me.
Some things–like walking–I obviously couldn’t manage (not right now, anyway). Everything else was an exercise in problem solving and project management.
I was back in charge. I could do this. I saw the way forward.
The Saving Elmo series covers my adventures after crashing to the ground on Elmo, my replacement knee, sustaining an “open, comminuted fracture of the left femoral shaft.” It’s a tad more dire than it sounds; if my bone doesn’t grow completely back and return me to normal function, there’s a new, more painful, less effective femoral replacement in my future…with eventual amputation.
If you want to follow along on the journey, try these posts: