lilstargirl

This is the story of my double jaw surgery. 

Day One.

We arrived at the hospital at 5AM. 

I had just picked up my mom at the airport the day before – she had flown in all the way from Dublin, Ireland, specifically for the surgery. My brother Frankie drove us to the hospital, and my boyfriend Matt met us in the lobby. It was a surreal feeling, arriving at the check-in counter as the sun was rising.

After signing my life away on a few brief forms, I was informed that I could have two guests to accompany me back to the pre-op room. Frankie hugged me goodbye, and the rest of us marched through winding back alleys of the hospital. Matt and I were coincidentally wearing our matching Taylor Swift Eras tour sweatshirts, freshly purchased from the Paris show a few weeks earlier. 

In our curtained cubby, we met a male nurse who seemed younger than me. He gave me bags for my belongings and a scratchy blue gown. He attempted to start an IV (twice), before giving up and delegating the task to another. I gripped a hot pink stress ball my mom gave me – the same one she had been apparently squeezing on her flight – and we waited for the necessary pre-checks. Time moved too quickly, and after being greeted by all the major players, including my surgeon, it was show time.

Matt and my mom were shown the waiting room, and we waved at each other as I was gently shuttled down the corridor. My bed on wheels swerved into a glowing white room, and people began buzzing around me eagerly. 

I tried to focus on my senses and my breathing. A young female surgical assistant introduced herself, and we made small talk as she shifted me on to the operating table. I studied her eyes as she wrapped me in heating blankets and tried to distract me with questions. I answered as I started to shake. 

I could feel the energy rise in the operating room as more and more people in masks and gowns flooded in. I asked the folks around me if they would get a snack break. They laughed while organizing the tools on the trays, and assured me they’d get one later. The anesthesiologist told me to start counting backwards from 100. Then, everything slipped away.

Seven hours later, I woke up in a panic. 

It had felt too short, like something had gone wrong and they’d had to halt the procedure due to some unforeseen circumstance. In the blink of an eye, my world had flipped upside down. I cried and readjusted to life in color, and was reassured that everything had gone according to plan. Things were fuzzy for a minute, until I snapped back into focus and was back in the ICU with my mom. 

I had little bandages on my cheeks, and an IV on each arm. Machines around me beeped as I took inventory of the things that were broken.

My mom let me know that Matt was waiting in the wings. Horrified, I said no, that I didn’t want to see him. In reality, I didn’t want him to see me, but he wasn’t taking no for an answer. Seconds later, I looked up to see him standing above me, holding a little plushie of an oyster, smiling.

Matt and I have been official for a little over a year, but have known each other since we matched on Hinge in November 2019. We’ve been through a lot together, including recovery from my double hip replacement in January 2020. He’s seen me at my lowest, and helped me through some of my most painful battles. I should’ve known to trust him with this too, but truthfully, I was afraid. 

The swelling wasn’t actually that bad the first day. Sure, there was a bit of bruising, and my nose was bleeding uncontrollably, but I felt pretty good about the initial aftermath. We all hung out for a few hours, until the end of visiting hours. I was able to take a couple sips of water with my pills, but most of the medication was administered through the IV in my arms. They ran saline consistently, so the line would remain accessible for other medication. I dozed in and out of consciousness, and they kept the drugs flowing. Then, I slept.

Day Two – Four

The first night was uneventful. I was on a wicked combination of morphine, tylenol, and oxycodone, so I slept without much disturbance. Nurses drew blood every so often, measuring heartbeats and oxygen levels. Later that afternoon, they decided I didn’t need ICU-level care, which was reassuring considering that I spent 21 days in the PICU after my initial double jaw surgery in 2011. Luckily, this time I had avoided an additional tracheotomy and feeding tube, so my stay was cut short. They detached and unplugged me from the monitors and we moved up a floor, to a more low-key post-op rehabilitation center. 

This is when the suffering set in. Suddenly, my face and jaw had been lit on fire, swollen to the extreme. The pain came in waves without reprieve, no matter how many ice packs or wet rags I applied. My bed was soaked with ice water, and I angrily buzzed the nurses every half hour begging for more and more medicine. My mouth had filled with blood from the incisions, and my lips began to form scabs. My only concept of time was the minutes counting down until my next dose of painkillers. I tried to sleep, propping myself up with pillows, using the remote controlled levitation of the hospital bed trying to find a comfortable angle. My head was instructed to stay elevated, so the inflammation could begin to dissipate. 

I just wanted to lie flat.

The cafeteria staff delivered my liquid lunch a couple times a day – apple juice, jell-o, chocolate milk. I was visited by dietitians, who prescribed Ensure for weight gain, and the day nurses turned to night nurses. My surgeon came by a few times to check on me, and I begged him for some relief. He sorrowfully told me that only time would help the healing. 

It became apparent that this first week would be the hardest, as the swelling got worse and my mental and physical strength diminished. I was hardly eating the broths and shakes being delivered, and I seldom got out of bed, only to use the bathroom. I was immobilized and dependent on assistance. I got into a dark headspace, begging for it to be over, crying that I couldn’t take much more. The pain spiked on day four, which prompted the longest night of my life. My mom stayed up with me, refilling my ice packs, dialing the nurses when the pain was too much to handle. Her and I battled through the early hours together, and she held my hand as she slept on the pull-out sofa next to me.

Time crawled by, and moments were blurry. The paintings and clock in my room flickered and came to life, in nightmarish opioid hallucinations. I was dizzy from the meds and unable to watch anything on the tv, so I spent most of my time sleeping and crying and feeling sorry for myself. The pain made me angry, and I wondered why I had signed up for this at all. I felt complete regret.

Day Five – Nine

After five long days, they kicked me out.

Technically, my surgical team delicately informed us that we didn’t need to be in the hospital any longer. That the medication could be administered at home, that I’d be more comfortable in my own bed, that it was time to leave. In my own twisted rationalization, I was appalled. It had only been a few days since such a major operation, and I was worried that I wouldn’t have access to proper care at home. I couldn’t buzz the nurses to my bedside at a moment’s notice, or have the reassuring squeeze of the blood pressure cuff. I felt too weak to tackle life on my own again, ripped free from the womb of the all-around hospital care. I felt that they had co-conspired to release me before I was ready, to suit themselves. 

My surgeon said that there is a certain effect that the hospital has on us: when we are in an environment that tells us we are sick, we begin to feel sick. He asked me to trust him, that I’d be okay. 

Turns out, I had nothing to be worried about, and he was absolutely right. We packed up my stuff, and I changed back out of my hospital gown back into sweatpants. I clutched the double ice packs to my cheeks as we waited for Frankie to return with the car. I sulked in the lobby, hating the world and my circumstances. I feared for the future. 

When we arrived home, I climbed into bed and began to process everything that had happened. The surgery had changed so much in such a short amount of time, and I was having a hard time re-adjusting to reality. I didn’t look like myself, nor did I feel like myself. 

My cat, Shaggy, climbed into bed next to me, and I set up my side table with gauze and water and other essentials. My mom started whipping up her famous healthy smoothies, and my anger slowly turned to gratitude. I realized I’m a lot tougher than I give myself credit for, and I’d be able to handle any unforeseen snag. I realized that my bed was comfy, my family was there beside me, and although healing would take time, the worst was behind me.

Matt came by the house with a different homemade soup every other day, lovingly created and tenderly delivered. Cream of mushroom, french onion, clam chowder, minestrone. He made big batches so it would last me a while, though I did share a bit with my mom and Frankie. 

I ordered a freezable ice pack on Amazon, specifically created for jaw pain, and tossed the old leaky one in the trash. I marveled at the changes taking place in my appearance, each day passing with progress and expectancy. I took my painkillers and antibiotics on schedule, with help from my mom, and the two of us found strength in each other.

There were still moments where I felt utterly hopeless. Being on a liquid diet, stripped from my friends and routine, confined to my bed, and consuming far too much Love Island left me feeling emotionally depleted. I tried to stay distracted, but the days dragged on and my mood swung like a pendulum. I tapered my opioids after a scary night terror, apparently common with the dose of oxycontin I was on. I vowed to get off of them as soon as possible.

Day Ten – Now

Since then, I’ve taken baby steps in the right direction. Recovery hasn’t been easy, and I have had to be intentional with my time and healing. I am a generally impatient person, so taking things slow and giving myself grace are contrary to my Aries nature. I wanted to bounce back instantly, so waiting for an unclear period of time felt like a special kind of torture. After complaining to Matt, he said it’s ‘airport rules’. Whatever must be done in order to pass time as peacefully as possible. I began to see my situation differently, as I had embarked on a journey into a liminal space, a limbo sort of existence. I’ve been trying to find small moments of joy, and doing what I can to keep my spirits up. Sometimes that means taking midday naps, caving into the drowsiness side effects of the medicine. Sometimes that means watching TLC shows with my mom, without the guilt of midday tv. Sometimes that means eating chocolate ice cream for dinner.

Not being able to eat has been the hardest part. As of today, I’m still on a liquid diet. I got rubber bands put on the hooks of my braces, so my jaw has essentially been (temporarily) sealed shut. I’ve been having visions of chicken quesadillas and cheese pizzas. I’ve been surviving on applesauce and greek yogurt and juice – even though my liquid diet is flavorful, I yearn for the day where I can take a big bite out of something crunchy.

My chin, cheeks, and lips are still numb. I still have troubles sleeping because of the pain. I still haven’t been able to return to work, or go out for more than an hour or two. Nonetheless, I’m more optimistic than I’ve been in the past two weeks, and I have flashes of excitement for what the future holds.

Surgery is hard. Recovery is harder. I went into this experience knowing both of those things, but have been brutally reminded of the strength it takes to survive. Without Matt, my mom, Frankie, my surgeon, and the dozens of other people checking in on me lovingly, I certainly would have succumbed to the tragedy of it all. 

But here we are, two weeks post-op, and I’m happy to say – the best is yet to come.

Xx,

Lil