Of Pins and Pain and Love

Love makes hard things easy, makes weak people strong, and makes the most difficult parts of our lives the happiest.

I couldn’t have done this without Patrick.

He scoffs at this when I tell him, but I remind him that I simply WOULDN’T have done this without him. I had no intention of even trying to change this foot before I met him, and it was only upon his eager insistence, his unwavering optimism, and his highly convincing confidence that I was persuaded it was possible.

Early on in my married life, I came to realize the myth that all a woman has to do is sit around waiting for a prince to show up and take care of her was just that- a myth. With two children in diapers, I made the decision to take my family’s financial future into my own hands and started my degree program in Engineering. I was allowed to do this on the strict caveat that it was not allowed to cost my husband a dime. I took out loans, both subsidized and unsubsidized, finagled the department to give me a few scholarships, and gratefully relied on my little sister’s generosity as she babysat for me. My husband at the time was not the sort to get up at night with a baby, so I was still a full time mother and housewife the entire time. By the time I graduated and got a job, I was accustomed to doing everything without help- planning for my family’s future, taking care of the kids, buying and selling homes and stock investments and running the household- everything. After I left my husband, my load didn’t really get heavier, but my confidence fell and I had to learn how to do everything alone without even a cheerleader to believe in me. And so I did.

But over the past year, Patrick has taught me to let go of the reins a bit and learn to accept a little help. I still struggle with it, but there isn’t much I can do about it these days with a cage on my foot. In the hospital, he slept sideways in a recliner, his head lolling over one arm of the chair and a leg haphazardly drooped over the other. He woke instantly at the slightest sound to ask how I was doing and ran out to chase down a nurse every once in a while. He stayed right at my elbow as the physical therapist forced me to walk up and down stairs and back and forth along the hallway on my crutches before signing off on my release.

When we arrived home from the hospital, he was too worried I would fall and instead carried me up two flights of stairs like a baby in his arms. He has managed all of the instructions from the doctors as I’ve been too drugged at most of our appointments to comprehend their conversations, and he has completely commandeered control of my medications. (The two times I have taken this into my own hands so far I took the wrong dose and

didn’t write down the time.) He cooks for me, makes me coffee every morning, does all the housekeeping and laundry, and watches all five of the children.

Of all of these chores, however, by far the kindest and most difficult is my pin care. Pin care is vital to prevent infection and will occur every day until my frame is removed. If performed improperly, the skin around the pins may heal wrong and cause tenting, a situation where the skin grows up around the wire in a cone and leads to skin tearing and irritation with any movement. If all of the drainage and scabbing is not removed each day, infection can brew and in no time this can lead to a deeper infection which may tract to the bone. Nearly every complication with a Taylor Spatial Frame results from problems with the pin sites and most of these can be prevented with adequate pin care.

Each evening after the kids have been put to bed, I take a shower and soak my leg with the frame in water. I am only allowed to use Dial antibacterial soap and I lather up my knee as I sit on my shower bench and rinse the soap down my leg over the pins. When I’m done, I towel-dry the frame and use a fan or blow dryer to dry the rest of the droplets. I lay down in bed with my leg elevated on a one foot-high foam wedge pillow and Patrick takes over. Using a sterile cotton-tipped applicator and sterile saline, he must diligently scrub each pin and gently push the skin back from the wire all the way around. Each pin requires a fresh applicator which must be opened from sterile packaging. After the first few cleanings, the pin sites were inflamed and irritated; even gentle pressure hurt immensely and with each of my gasps he would stop

and catch his own breath, visibly upset at the pain he was causing me. He must watch for infection and monitor each bruise and blister closely to report it the doctor, and sometimes this involves tracing a line around a reddened area to see if it spreads or snapping a photo to email to my doctor. Once each pin has been cleaned, he places dry gauze carefully around

*An irritated pin site- excruciatingly painful with each movement.*

each of the pins which are still draining and tightens the plastic clip on the wire to put pressure on the dressing. When this is finished, he turns the struts. There are six of them and the changes have gotten larger as the ankle has now been separated and we are beginning the movements to raise my toes and lower my heel. He turns the dials slowly on each strut for fear of hurting me, but I groan and gasp anyway.

The entire process takes about an hour and we have a pretty good system now. He puts Bob’s Burgers on to distract me and we laugh and make fun of each other the whole time. If you don’t know Patrick, you don’t know that he is not good with these things. He cannot stand gore and his idea of what constitutes gore is pretty pathetic on my scale. While I knew I could count on him to get the door for me and help out with cooking, I honestly thought I’d be on my own with most of the raw and dirty medical procedures.

*Turning the struts- that one in the back needs a little help sometimes.*

But love is odd.

Love makes hard things easy, makes weak people strong, and makes the most difficult parts of our lives the happiest. It makes a man who hates the site of blood buck up and take over without comment or complaint because he doesn’t want me to struggle on my own. It makes a woman who likes to complain bite her tongue when it hurts because I don’t want him to worry that he’s hurting me.

I can’t walk, I have a monstrosity on my foot that rivals some of the best horror movie props, and I have never been happier in my life. Thanks to love.

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Well, Shit

I remember getting my first pap smear when I was sixteen. I didn’t take my bra off, which confused the doctor who just shook his head quickly at the nurse and said not to worry about it. I was so obviously mortified by nudity that he stopped trying to make conversation about halfway through and just got in and out as quickly as possible.

Those were the days. Sometimes I miss my dignity and self-respect. After a couple of decades filled with multiple surgeries and childbirths, I don’t really remember what modesty feels like anymore. I suppose every woman gets that way as she ages; dropping her panties and spreading them for public viewing just becomes an old habit. Right now, though, I am feeling pretty lucky that regularly occurring indignities no longer phase me.

Narcotics are amazing. If you have pain- I mean real pain, the kind that won’t let you focus on anything else- narcotics can be your savior. At 23, fresh out of the hospital with a bandaged splint on my right leg and a skin graft site covering my left cheek, I was grateful for the existence of narcotics as well as my mother’s insistence that I take them on schedule to avoid the pain all together. Wise advice from a seasoned RN. She failed to mention that narcotics have a miserable side effect though: Constipation. I can’t recall how many days went by before I finally told her in tears that I couldn’t go to the bathroom to save my life and things were starting to get dire. You would think by this point I’d have had no secrets left from her. This is the same caretaker who had catheterized me herself in the hospital and was at this point blow-drying my naked rear end twice a day to speed the graft site healing. Still, I waited to enlist her help until I couldn’t wait any longer.

fleet — Fleet enema. (Not the actual bottle used in this story.)

My mother is a saint. She patiently explained to me that this was very common with narcotics and gave me some stool softeners and calmed me down. When this failed to do the trick and instead exacerbated an already somewhat urgent situation, she ran to the store to buy a Fleet enema.

If you’ve never had an enema before…screw you. I don’t how your karma is so great to have avoided this major life milestone, but I’m certain it will catch up with you. I’m off-topic. An enema is either water-based or oil-based and is essentially just a big squirt bottle full of liquid to be injected directly into your rectum. Once it is in there, it breaks up whatever stool is causing a blockage and lubricates the pathway to enable you to poop. It’s not rocket science, but it’s effective. In order for this to work, however, you have to squeeze your anus closed and not let anything out until it has been in there long enough to accomplish something. This is the hardest part since after days without a bowel movement your lower intestines are already full to bursting and adding more liquid to the mix just makes it worse.

I very vividly remember laying on my side in tears in my mother’s bathroom as she pulled my cheeks apart and squirted the Fleet enema in, the whole time saying urgently, “Now don’t let it come out!” I laid that way for about fifteen minutes until I couldn’t stand it and leapt for the toilet. Thankfully, it worked, but it was a few days before I wanted any more than a liquid diet.

My relationship with excrement has pretty much gone downhill from there. Once I had children, my definition of gross changed drastically on the day I found myself sitting in a college classroom certain that I could smell poop. I checked the bottom of my shoes and starting looking around at the people next to me to find the offender. Eventually I noticed the smell got stronger every time my hand came near my face… I turned my hand over and sure enough, there was a line of baby poop smeared up the side right below my pinky finger.

Fast forward a decade and now I have a few more experiences with narcotics under my belt. I’ve learned to avoid my previous pitfall for the most part with proper supplements and diet, but the narcotics I was on following my recent surgery were stronger than anything I’ve had since my original illness; I simply wasn’t prepared. It was five days before I finally broke it to Patrick I hadn’t gone to the bathroom. We were on our way in to my post-op follow-up appointment and I had just thrown up the entire contents of my stomach. The doctor was concerned enough by my admission to call in the advice nurse who specializes in such things; the advice nurse seemed very concerned. I was weak, my pallor was poor, and my stomach wasn’t letting anything else in until I fixed this. The nurse was very concerned and advised us to go the emergency room if this went any longer. Since we were in the area, and already had a nice hospital wheelchair, we went straight to the emergency room from the doctor’s office.

Constipation does not rate high on the triage scale, unfortunately, and after one failed Fleet’s during which I sat on the toilet while the nurse haphazardly stabbed the tip of the bottle around squeezing oil all over my rear end, we waited with no further assistance and no resolution for a couple of hours. Waiting is one my least favorite things, right behind waiting with snakes. So we went home.

My mother was at home watching all of the children, and had earlier purchased a Fleet enema in anticipation of this very moment. As mothers do. We ushered Patrick out of the bedroom and I laid on my side positioned so Mom could reach the sink for warm water while I kept my foot elevated on a pillow. As she pulled my cheeks apart, I raised my head, smiled lovingly at her, and said, “Wow, this is just like old times.” Thank you, Fleet, for bringing mothers and daughters together for generations.

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The surgery

Monday, June 15, came EARLY. We had to get up at 3:30 to make the hour drive for check-in at 5:30. Naturally, I hit snooze until 4:15. I packed almost nothing, responding to Patrick’s concerns over this with my certainty that I would be issued a lovely hospital gown and all necessary toiletries would be provided. Besides, I had no one to impress. For a fleeting moment I considered the likelihood that my mother would snap a groggy-eyed photo of me in recovery to post on facebook. As this couldn’t possibly be any worse than the Christmas morning photos in my pajamas with geyser type hair on half my head and my lips so dry they apparently stayed tucked up onto my gums showcasing my chipmunk teeth, I shrugged it off.

I tip-toed into the kids rooms and gave them fierce hugs and kisses that half-woke them from their dreams and said goodbye. In the back of my mind were all the random stories you hear of people going in for a routine surgery and dying on the operating room table because their anesthesiologist was a closet coke addict and forgot to turn on the oxygen. Or similar scenarios. This surgery was not routine or short and was scheduled to last half the day.

On the drive there, Patrick got coffee. For himself. I was not allowed to eat or drink, presumably because if you do die on the operating room table, they want you looking as slender and beautiful as possible. I was silent for most of the drive, but I can never stay introspective for long and soon Patrick had me laughing. Somewhere along that drive it occurred to me that although it would be long and torturous for Patrick and my mother to sit and wait for word of how I fared, I would be asleep that whole time. For me the surgery would be “Oh, I’m feeling groggy,” and then I’d wake up. That lightened my mood quite a bit.

Check-in was fast and as expected I was issued an amazing Vera Wang-esque hospital gown upon admittance. I stubbornly demanded underwear and the nurse gave me a pair of white mesh panties new mothers get after delivery. I secretly loved them. Before Patrick could join me to wait for the surgeon, I went through the necessary scrubbing of the leg, iv inserted, monitors stuck haphazardly across my chest, and – this is the best – a hose blowing warm air was attached to an opening in my gown. My hospital gown filled up with air and they covered me with a blanket pulled directly out of a warming oven. As I crossed my arms and waited for Patrick to be ushered in, I noticed the warm air was filling out my normally frail bosom quite nicely. Patrick noticed too and complimented me on my rack as he entered. Maybe it was the Oxycodon and Valium they had just given me, but it all seemed not so terrifying at that moment. We talked about how much food I intended to eat when I woke up and as each new specialist came in to introduce themselves, I would slide in a comment about preferring to wake up with all my limbs still attached. When my surgeon arrived, I asked her if she’d gotten enough sleep and had all her coffee that morning. She laughed slightly, but I could tell she was already in the zone and focused on getting this shit done right. Her demeanor set me at ease.

In my surgeon’s own words, the actual ankle surgery, or osteotomy, is a fairly minimally invasive, straightforward procedure. With a small number of short incisions in the front and sides of my ankle, she would be able to fit a wire around the existing bone and essentially saw her way through where there used to be a joint, separating my tibia and fibula from the talus bone. These incisions would then be stitched up and the frame would be affixed using wire that would drill through one side of my limb, through the bone, and come out the other side. These wires would be inserted in my foot at the top just below my toes, in my heel, and in my leg at counter angles to prevent lateral movement of my limb along the length of the wires. The ends of the wires would be wound around bolts along the frame and tightened to create a tension-bearing member capable of withstanding the force required to shift my bones without stretching or bending. External fixation has been around a while, but the Taylor Spatial Frame is a relatively recent invention which utilizes fixation and gradual correction to modify bone. While my surgery is fairly basic and unexciting for a surgeon who specializes in limb deformities, some of the miracles these contraptions can achieve are nothing short of life-altering and awe-inspiring.

My last memory was in the operating room performing a flawless butt-scoot from the gurney to the operating room table. I vaguely remember seeing my surgeon’s face, and then I awoke in recovery. I guess it hurt, I don’t remember it that well as the recovery nurse was quick with the good drugs whenever I started to grimace. I looked at my leg right away, but there wasn’t much to see as the frame was wrapped in ace bandages top to bottom, completely shielding the carnage beneath. I asked for a pillow to elevate it and the nurse seemed surprised I could lift my leg without assistance as he tucked a pillow under my ankle. I’ve read many stories from others who’ve had this surgery and they are unable even to bend their knees or move their leg without manually lifting the frame with it, so I immediately felt lucky for my level of mobility.

It took three hours for a room to open up on the med-surg floor. Once it did, my experience went downhill. My surgeon had prescribed Oxycodon, morphine, and Tylenol. Sadly, this was not helpful and I writhed in agony sobbing until my nurse’s shift ended and she gave bedside passdown to the night nurse. I interrupted them to demand that someone call my doctor, at which point the nurse said they really didn’t like nurses to do that. My new night nurse acquiesced and my doctor not only prescribed much heavier pain medication, but also expressed annoyance that she hadn’t been called sooner. I might have taken the time to look smug if I hadn’t been in so much pain. Eventually the pain abated, but I hardly recall the rest as I was heavily stoned for the remainder of my stay. I vaguely recall pushing a button marked pain whenever I would start to feel anything, and in short order soemone would come in and shoot something into my iv, bringing relief in as little as five minutes. I had to pass a physical therapy test on crutches before they would allow me to leave, and Patrick staying right next to me the whole time for fear I would collapse. I was so stoned you guys.

I was released Wednesday, just as a migraine hit me and forced me to vomit up all of my meds. They gave me this Zofran for nausea which sits under your tongue and claims to dissolve like magic. The reality is that it sits under your tongue and makes you more nauseous as it mixes with your saliva and tastes like glue. It might be the worst invention ever.

All I remember about going home was laying across the back seat as Patrick swung by to pick up his five-year old daughter and explain that for just this once she would need to ride in the front. Her eyes got huge and she immediately rallied at the sacrifice. The next few days are sketchy. I laughed a lot. Patrick worried I was too stoned and starting cutting back my medication. At night he set his alarm for every hour and a half so he could get up and give me more medication, and he tracked every pill and dosage and time in a notebook with a diligence I wish I’d put into my kid’s baby books.

On Friday, I got to see my foot. Seven metal wires ran through my foot and leg holding one side of the frame to the other. Additionally, four metal rods about a half-inch (Patrick says a centimeter, whatever) in diameter were drilled into the front of my tibia. In all, I have 18 holes with metal protruding out of them, or 18 pin sites as they are called in the biz. Another way to look at is 18 entry points for germs to travel straight to my bones. Infection right now is my primary enemy and my first concern is keeping those pin sites clean.

You can see in the side view photo the adjustable struts connecting the frame along the bottom of my foot to the frame just above my ankle. There are six of these and starting about ten days out of surgery, I will turn each one to a prescribed number to stretch the soft tissues and Achilles tendon at the back of my ankle, widen my joint space to enable movement, and subsequently rotate my entire foot up to a flat position. In the office during this visit, the surgeon noted that one of my struts had gone slack and the number was 3mm longer than it should have been. She tightened it minimally in the office and directed us to reset it the rest of the way when we got home. That night, Patrick turned the strut, talking to me the whole time so that I didn’t even realize he was doing it. No pain.

This should be a breeze.

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Wait…WHA?! WHYYYY?

The sale went like this:

We’re going to put a huge frame around your foot, run wires all the way through your bones attached to the frame on either side, drill a few metal stakes into your shin bone, and leave you like that for about…oh…say half a year. We’ll put these crazy engineered struts all around it and every day you will turn each strut to a specific number and over time this will force your foot to lift until it is flat, then you just walk around like that for a while until we yank the frame off. You won’t be able to put weight on it or work or drive and it’s going to hurt- I mean HURT- the whole time. Sound good? Here is a snapshot of the device if you’re still considering it…

Obviously, I said no. What a terrible idea! Who in their right minds would do such a thing to themselves on purpose? I thanked the doctor for her time, promised to think it over, which of course I had no intention of doing, and went home feeling defeated.

When I retold the story to Patrick, his response was very different. He couldn’t wait and told me to schedule the surgery as soon as possible. He began listing off all the things I would be able to do once my foot was flat on the ground- hiking, jogging, bowling, skiing, ~~kite-boarding~~ (I was told after mentioning this aspiration to a coworker that this is quite dangerous)… okay, wind-surfing then, wearing flip-flops, walking in real tennis shoes, standing barefoot, taking a step without agonizing pain… He promised to take care fo me the whole time and do every little thing for me if that’s what it took if only he could see me out of pain at last.

Patrick is very persuasive. To understand how I got to this place, I think it is important to understand my starting point. The following images show my right foot in its current disabled position.

If you are thinking this looks painful, you are correct.

I wish I’d vacuumed before these were taken, but I digress.

I’ve been like this for over fourteen years. I do everything on this foot in three inch heels, including hike (although I limit myself to a mile or so as I can’t really stand much longer) and it’s getting really old and making me old. Every joint hurts now, not just the ankle, and I know I’m limping around on borrowed time.

It’s called the Taylor Spatial Frame. It’s an external fixator which functions very much like braces to slowly adjust bones over time. It is often used for leg lengthening or fixation of complex fractures and relies on the medical fun fact that bone can grow at a rate of up to 1mm per day and is the only tissue in the human body which does so without scar tissue. At the end of a correction with external fixator, the new bone or repaired fracture is as strong and healthy as if it had been there all along. For my procedure, the ankle joint is chiseled apart where the bones have grown together to recreate the old joint space at the point of articulation and over a period of a month the struts on the frame will stretch the joint apart and rotate my foot until it is positioned at 90 degrees and sits flat with my heel on the ground. After that, I wait for four months or so while the bone grows back together and condenses.

Of course there are risks. Six months of pain aside, pins which run straight through my bones are at constant risk of infection which can quickly lead to osteomyelitis- a serious bone infection which caused all of my disfiguring disabilities in the first place. There is risk that the joint will not grow back together- this is called a non-union. There is risk the pins through my leg and foot will create fractures in the bone, causing delayed healing. And there is the ever-present risk that inevitably this will fail and I will face my greatest looming fear: amputation.

The prep work leading up to the surgery put me in a manic state similar to a nesting mother. And if you consider it… the scenario is very similar. I will be uncomfortable with limited mobility, unable to wear my current clothing, for over half a year as I wear first the frame, then a cast while the holes from the pins heal. In the end I will give birth to a new and improved foot which, all things working out as planned, will be far superior to my current situation and I will know a pain-free life again. I had to arrange an alternative work schedule with my employer as not working for this length of time as a single mother with no support from another parent was not a viable option. Luckily, I have possibly the best manager on earth. He advised me to focus on my health and work from home as much as possible. Check. I had to modify my vehicle so I would be able to drive since, as aforementioned, I am a mother with children who need to go places and I have a job to get to. We modified my van with a left foot accelerator pedal and after test driving it once already I can tell you it will do quite nicely. Check. I had to prep my bathroom for all the medical supplies I would need, a shower bench, install a shower hose, and find some sot of bench for elevating my foot while peeing. Check, check, check, and check. And the clothes. You can’t fit much over one of these ridiculous looking frames, so I now have an assortment of maxi skirts which serve the dual purpose of both sliding on effortlessly and hiding the lower limb monstrosity. Check.

The only thing left to contend with was my fear, and for that I relied on Patrick. We came up with a mantra that fills me with focus and calm: Flip-flops.

The surgery was scheduled for 7am Monday morning, June 15. On Friday the 12th, I said my farewells to everyone at work, promised to send gnarly photos to those who oddly wanted to see them, promised not to send them to those who begged me not to, and celebrated my last weekend of walking on this foot with a Friday night among friends singing really bad Karaoke. My mother came over to help, bringing my niece, and after I spent Saturday cleaning house waiting for them to arrive, we had a relaxing Sunday showing my niece around Portland, eating too much good food, gorging ourselves on ice cream from Salt & Straw, pedaling a bicycle surrey down the waterfront past the Gay Pride Festival (best way to take an Idaho nine-year-old to that sort of thing, I think- you get a taste of shock without really damaging her irreparably), and then my kids came over in the evening because Georgia was worried I was scared without her. I was scared.

Flip-flops.

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