TWENTY DAYS, TWENTY NIGHTS
I didn’t remember anything when I woke up. The Fentanyl told me that I had surgery to get rid of the Arthritis I’ve had since I was 18 months old, and that no one had told me I was getting it because they wanted to make sure I went through with it. The Fentanyl told me I was in a hotel/hospital in Downtown Disney, and that I would be able to see my mom and sister when I could walk. For the next few days, the Fentanyl told me the people I loved were on the other side of the door to my room in the PICU, or that behind me, there were stairs down to the beach where my family was throwing a party for me. For the next few nights, I couldn’t close my eyes without the Fentanyl showing me naked bodies smothering me. Of course, none of this was real. They were all hallucinations.
Tuesday, August 3rd, 2021
I went to Urgent Care with a sore throat, but all three swabs—the Strep, Mono, and COVID tests—came back negative.
Wednesday, August 4th, 2021
I woke up with the worst headache of my life. I had to crawl to the bathroom every time I felt like I needed to throw up, but the dry heaving only made my head pound harder. It was too hot on the second-floor of my house, so I slept on the couch downstairs that night.
Thursday, August 5th, 2021
I woke up with the feeling that my right hip needed to pop. I thought I had just slept on it wrong. I tried all the stretches I could think of and that the internet could suggest, but nothing worked. My mom drove me to a sports medicine office, and they tried stretching and heating my hip, but again, nothing worked. When I got up to leave, I was brought to tears by the pain radiating from it. We drove back to Urgent Care, the second time in three days, but they said they couldn’t prescribe me pain medicine. Their best recommendation was to go to the Emergency Room. They had to put me in a wheelchair to get me in the car.
When we pulled up to the ambulance bay at Mission Hospital, my mom yelled for another wheelchair and I was wheeled in, alone, while she went to park. I was sitting in a hallway beyond the waiting room, in the overflow; almost every seat in the regular waiting area was full. I don’t know how long I had been sitting there; it couldn’t have been more than 10 minutes, but I was starting to feel dizzy. I wondered if it was the surgical mask they handed me when I walked in, trapping my hot, exhaled air, feeding it right back to me. I wasn’t scared, I just felt kind of out of it. My mom found me, and I told her I felt like I was going to pass out. Nurses lifted me onto a gurney and wheeled me into a small room, where they hooked me up to EKG leads.
My heart rate was dropping fast, so they took me into another room for a full body CT and MRI scan. While we were waiting for results in yet another room, one with a bed this time, my mom and I were texting our dinner order to my dad so he could have food ready by the time we got home. But I never went home that day. It would be 20 days before I went home.
I remember a doctor coming in and telling me I would have to stay overnight—alone. I was 18 years old, and COVID protocols were still in effect. They told me that my parents would be back in the morning. The last thing I remember was hearing a monitor for another patient, I think they said it was an older woman, beeping on the other side of the curtain in the hospital room I would be staying in. They started sedating me that night because my anxiety had gotten so bad after my mom left. I just wanted her to come back. I don’t remember anything after that.
Friday, August 6th, 2021
I was moved to the children’s ward in order to be seen by more doctors. Apparently I started complaining about my right knee, and then the rest of my leg. My parents called my rheumatologist in San Diego and asked if she thought it could be Arthritis related. She said there was no way to know without seeing me. According to my mom, I was in and out of delirium, shaking from the pain. That night, they moved me to the ICU.
Saturday, August 7th, 2021
On my phone, along with a few messages that could easily be mistaken for drunk-texts, there is a voice text I sent to my dad at 4:56 a.m.—I have no memory of sending it. I was trying to answer his text in response to a message I sent to him at 2:41 a.m., asking if he was coming back. It’s 14 seconds long, my breathing is labored, and I can hear the sobs in my voice. I can’t imagine how he must’ve felt getting those texts from me—probably more helpless than I’m sure I felt. I’m glad I don’t remember the thoughts going through my head when I sent them. My mom told me that I had called her earlier that night, crying that the hospital was on fire, that all of the alarms were going off. I was sedated, and my mind was so deluded from the pain that I mistook beeping monitors for fire alarms.
The hospital called my parents a few hours later, telling them that I had been intubated and put into a Fentanyl-induced coma because I was declining so fast. My body was failing, my organs shutting down. I could no longer breathe on my own—they told my parents I was in critical condition. The doctors at Mission Hospital couldn’t figure out what was wrong with me. They had tried multiple kinds of antibiotics during the two days I was there, and none of them had made a difference. They had run tests to see if I had an infection, but they all came back negative. Their best guess was that I was having an Arthritis Super-Flare, that my immune system was attacking my whole body at once.
By 4:00 p.m., I was airlifted to Rady’s Children’s Hospital in San Diego, where my rheumatologist works. What normally would have been over an hour drive was only a 17 minute life-flight. When I got to San Diego, their next best guess was that I had Tuberculosis, which is highly contagious, so the doctors were consulting with the CDC. They were ordered to place a vent out of my window in order to send the air in the room outside instead of back into the hospital. They tried to drain the fluid out of my hip, but nothing came out.
At some point in the day, my rheumatologist ordered a spectrum test, meaning they went down to my DNA to look at the sequencing in order to find out if I had an infection. That’s when the doctors found the truth. It was a Streptococcus (Strep) infection that had gone into my bloodstream. This caused Toxic Shock Syndrome (TSS), which is what shut my organs down. The infection had settled in my right hip and knee, turning into Septic Arthritis.
Sunday, August 8th, 2021
They went with a camera into my right hip, knee, and ankle, again attempting to clean out the infection. This time, they found 10 CCs of pus in my knee, but nothing in my hip or ankle. While I was in surgery, one of the nurses told my mom I had tried to get out of bed the night before, still under sedation, and it took six nurses to hold me down to administer more sedation.
Monday, August 9th, 2021
The doctors told my mom that my kidneys were functioning almost perfectly again—they had been critically low functioning when I was induced into the coma.
Tuesday, August 10th, 2021
The doctors performed a chest X-ray, finding that the fluid in my lungs had reduced by one liter in just 24 hours. They also placed a feeding tube—I hadn’t received any nourishment in two days—my organs wouldn’t have been able to process any food before this.
Wednesday, August 11th, 2024
There was talk of removing my ventilator the next day. I had been running a slight fever since the night before, so they had to wait and see if it would resolve itself. My fever spiked that night—they couldn’t remove my ventilator the following morning. Instead they ran an MRI, which showed that I had no hotspots of infection—a promising result—but one of the doctors noticed that my hip was still swollen. They tried to drain it, and found more pus. The doctors wanted to send me to surgery to formally clean out my hip and knee again.
The surgery was postponed until the next day because of priority in the operating rooms. Someone was more sick than me. Someone needed surgery more desperately than I did. They probably were in a condition similar to mine just days before. And since I was at a children’s hospital, they were also probably much younger than me. I hope they’re doing well.
Thursday, August 12th, 2021
They rinsed out my right hip and knee out of precaution, cleaning out the joints from visible infection for good.
Friday, August 13th, 2021
I was stable enough to be taken off of the ventilator. I woke up for the first time in seven days.
This is when the Fentanyl started telling me things. But more urgently, I wanted Gatorade—the blue kind. I felt like I’d never had water in my whole life. But no sound came out when I tried to ask my dad for it. I cleared my throat and tried again, but it still came out as a whisper. I don’t know if it was then, and I don’t remember who told me, but I learned that I had fluid in my lungs from being on a ventilator. That machine breathed for me for seven days, but now that I was on my own to breathe, I had to cough up all of the mucus in my lungs that was stopping me from making sound. My dad and I called it “swish and spit,” which is a nice way of saying cough up phlegm, swish some water in my mouth to help it not stick to my lips, and spit it all out in a plastic bowl. In the beginning, it was blue because of the Gatorade. I was praised for the amount of mucus I coughed up—although it wasn’t exactly something I was proud of, everyone else was, because it meant I was gaining strength back in my lungs.
I had been in a coma for seven days—technically asleep—but I’d never felt so tired. And yet, I couldn’t sleep. For the first few nights, it was because of the hallucinations. Once I was weaned off of the Fentanyl, and I was addicted to Methadone instead (an opioid that’s used to treat addiction to opioids like Fentanyl), it was my body that prevented me from sleeping. My whole right leg, from my ankle up past my hip, was wrapped in a thick cloth bandage, and it had to stay elevated, so I had to sleep on my back. The back of my head was numb from laying on it for seven days straight, and I wasn’t getting any relief by still sleeping on it. I’ve always been a side and stomach sleeper, so the urge to roll into a more comfortable position was overwhelming. I also had to sleep on my back so the nurses could access my IV while I was asleep—or at least supposed to be.
Saturday, August 14th, 2021
It was impossible to sleep when the monitors surrounding me kept beeping and a nurse was coming in multiple times a night to check on me. The pulse oximeter on my index finger glowed red under the thin knit blanket, and every time I moved, the monitor it was hooked up to would beep. The nurses finally taught my parents how to turn it off so I could fall back asleep faster.
Sunday, August 15th, 2021
My twin sister came to visit me. I was still drugged up and confused, so I didn’t realize that we were supposed to be driving to Utah that day to move her into her dorm. She distracted me while my mom detangled my hair that was still a matted mess from the ventilator straps. We hadn’t seen each other in 10 days. That was the longest we’d gone without seeing each other, with the exception of a few softball trips she’d been on. She had sat in her bed, waiting for updates about me, wondering if she’d ever see me again. At least in the coma, I didn't have to worry. She left for college the next day with my mom. She had to try to make friends in a new state while I was still in the hospital, trying to build up the strength to feed myself. I was weaker physically than the doctors expected. I think my sister had it harder, though. She was going to be on her own once my mom left.
Monday, August 16th, 2021
I got out of bed for the first time in 11 days. I moved slowly across the room, fully reliant on a nurse in front of me and a belt that she held around my waist to stop me from falling. I steadied myself with my hands on her shoulders, and shuffled my feet forward one at a time, pushing her feet back with my own. It was also my first day of occupational therapy. We started by tossing a beach ball back and forth. Then she made me take out the bun my mom had done for me and redo it by myself. I couldn’t keep my arms up long enough to get it as tight as I wanted. I know my dad would’ve tried to help me fix it if I had asked, but I already felt like a burden for all of the big things he’d done for me.
I also had my first bits of solid food that day, although I don’t remember what I ate. My hands would shake whenever I tried to hold anything, even if it was as small or as light as a cracker. I remember putting the food in my mouth as quickly as I could so I would be able to relax my hands faster and make the tremors stop.
My dad told me, with tears in his eyes, about something he had seen on his way back from the cafeteria. There was a harpist, with wheels attached to the bottom of her harp, pushing it around while playing it in the PICU. There was a mother next to her, and they were following a little girl, not more than four years old. She walked gracefully, as if the harp was playing only for her. My dad said she looked like an angel. I thank God, for that mother and that little girl, that she was an angel on Earth and not in Heaven. I pray that she has a long, happy, and healthy life ahead of her.
Tuesday, August 17th, 2021
I didn’t fall asleep until 5 a.m.. I asked my dad to turn on ocean noises to help me fall asleep, then I asked him to turn it off a few minutes later because I thought it was going to make me have to pee. I asked him to turn on white noise, then I asked him to turn it off a few minutes later because it was making me anxious. I remember him tearing up because he didn’t know how to help me, and because he was just as exhausted as I was.
That day, I walked with a walker—one step up from using the nurse as one. I was wearing my old checkered Vans with a hole in the right toe, shoved over my green grippy socks and swollen ankles, still filled with a layer of sand at the bottom because they were my beach shoes. They were what I had slid on the day I left for the sports medicine place, then Urgent Care, then the ER. I had no idea I would be putting them on twelve days later as I relearned how to walk. I might have picked something with a bit more traction if I’d have known. Apparently using all of my strength to walk again was a natural sleep aid, because I slept from 11 p.m. to 6 a.m. that night.
Wednesday, August 18th, 2021
The bloodwork my nurse had taken in the middle of the night showed that my inflammation marker had gone from a 16 to an 8—the best it had been since I’d gotten admitted (the normal level for someone with Juvenile Rheumatoid Arthritis (JRA), like me, is a 1). This meant I could finally be moved out of the PICU. I was transferred into a regular hospital room that afternoon.
It was in an older wing of the hospital, on the first floor. It had a single door out to a courtyard, where there was a sandbox and a few tables—a reminder that I was at a children’s hospital. The room was dimly lit, a sink with a mirror right across from the foot of the bed, a blue vinyl recliner next to the door that led outside. It felt less sterile than my room in the PICU—not more homey or comfortable, but dirtier. I had no right to be picky about what hospital room I was in, but this felt like a downgrade. The teal and tan checkered linoleum with the matching teal walls was outdated, probably why it felt so unclean to me—I didn’t know how many kids had been in this room before me. I didn’t know how many kids had slept in this bed, or walked on this floor, or what germs they’d had.
I changed out of my hospital gown and into my regular clothes. Just like my checkered Vans, these were the clothes that I had thrown on thirteen days earlier: an oversized O’neill t-shirt that I had thrifted, the dark blue beginning to fade from the amount of times it had been washed, and a pair of black wide-leg sweatpants that my mom had threaded a shoelace through the waistband of because they were too big for me.
A physical therapist came down to my room, and I slid on my sandy shoes to walk laps around the wing. I was still leaning on the walker, but I moved a little bit faster than the day before. After a few laps, she led me back into my room and had me do squats while holding onto my walker—30, to be exact. Two sets of 15. They were easier than I thought they would be, but they were too much for my body after being immobile for 11 days.
Thursday, August 19th, 2021
I woke up more swollen and in more pain than the day before, thanks to the PT that overworked me. I was told that my bed was for sleeping only, so I spent all day in the blue vinyl recliner in its upright position.
Friday, August 20th, 2021
My inflammation marker was back up, most likely because of the oblivious PT, my right knee more swollen than it was even the day prior. Aside from that not-so-good news, there was an open room in the new wing of the hospital, and I was moved that day. It had a view of the parking garage and the entrance to the Ronald McDonald house. This room was much bigger than my last, with a big barn door leading to the bathroom, a long sofa that turned into a bed for my dad or mom, and a huge window that took up almost the whole wall. It felt clean. It felt like I could recover there.
My mom came back from moving my sister in, and the hospital granted my parents the exception of meal-time to both be with me. My dad went home to sleep in a real bed after five nights of sleeping in a recliner.
My central venous catheter (CVC) had to be removed because it’s weight was pulling down on my neck so much that they had been taping it upright for a few days. This meant that I would have to get a PICC line placed in the inside of my upper right arm.
I was wheeled down to another room and asked if I would like to be sedated or put under. I just asked for a light sedation to calm my nerves, not wanting to be put under so soon after the coma. I don’t think the anaesthesiologist took a good enough look at my chart, because the numbing injections and the sedation never kicked in. I felt everything. I felt the doctor slice into my arm. I felt crunching as she fed the catheter into my vein. I felt the tube slide down inside of my arm, inside my vein. I waited until I was wheeled back into my room to cry.
For the first time since waking up from my coma, I cried. The dam of bravery (and maybe avoidance) burst, and every emotion I had been holding in came flooding out. I hadn’t acknowledged anything that had happened to me. Almost dying. My sister leaving. Being away from home. The uncomfortability of my body.
Saturday, August 21st, 2021
My rheumatologist, Dr. Chang, came to see me, for the first time since I had woken up.
My mom told me that while I was in the coma, she’d heard Dr. Chang tell some nurses that I was the coolest girl she’d ever met. I’ve always looked up to her, not just because she also wears a ring on every finger, or has vintage Chanel necklaces stacked around her neck, or that she wears Gucci loafers, but because she has always listened to me and taken me seriously when I’ve talked about my pain.
After a short physical exam, Dr. Chang told me that I was still having an Arthritis flare in my left ankle, right knee, and right elbow. I have Polyarticular JRA, which means that it’s in more than five joints in my body, but it’s always only flared in my ankles, knees, and hips. I had never had it in my elbows before. The doctors had told my parents, when I was in the coma, that there was a possibility that I could go into remission from my Arthritis. This new flare was a sign that remission was unlikely.
Sunday, August 22nd, 2021
It had been long enough that the hole in my neck from my CVC was starting to close up, meaning my mom could finally wash my hair and my body for the first time in 17 days. I’d had sponge baths while I was asleep, and I’d been given shower wipes to wash up in the days following, but I hadn’t felt clean in so long. I sat on the cold shower bench while my mom washed my hair, careful to not get the bandage on my neck or the PICC line in my arm wet. She held the handheld showerhead over my legs while I shakily tried to shave them, eager to get rid of the scratchy hair that I’d always been routine about removing. After she dried me off and got me into pajamas, she braided my hair, just as the nurses had braided it when I first woke up.
Monday, August 23rd, 2021
I tried to login to my laptop for the first time and couldn’t remember my password. I had to text my sister and use the hint that Macbooks give after a few failed attempts. When I logged into my college portal, classes had already been chosen for me: ENGL-145 Writing Arguments, BIO-123 Biology of Sex, and ART-112 Western Art. I guess you don’t get to pick your classes when you’re in a coma. I checked my college email. My roommate and I had gotten the dorms we wanted. My move-in date was in 22 days. There was an email from the president of the college. “Notification of a Student Death.” An incoming freshman had been hit by a car while riding his bike. He was probably so excited to go to college. So excited to meet new people. So excited to study something he loved. But he’d never get to. A few days prior, that email could’ve been about my death. That’s how close I was to it. I don’t know why God chose him and not me to be the subject of that email.
Tuesday, August 24th, 2021
My inflammation marker went down to a 3. The lowest it had been since I got to the hospital. They transitioned me to an oral antibiotic and brought up the possibility of my going home the next day. It felt like I was being pushed out the door, but someone else probably needed that bed more than I did—which was a very good thing, for me atleast.
Wednesday, August 25th, 2021
Twenty days and twenty nights, and I was finally going home. All they had to do was take out my PICC line, and I was free to leave. My nurse had me lay down on the hospital bed for the last time, and try to relax my arm so that I wasn’t tensing my vein around the catheter. She had to stop halfway because I had started thinking about what was going on inside my arm, unconsciously causing my vein to constrict. Once it was out, they had me stand on a scale before I left. I had lost 13 pounds during my twenty days there. They handed me a chocolate Ensure protein shake, then wheeled me through the halls and out the sliding doors.
About a week later, my parents and I drove halfway to my grandparents’ house to meet them for lunch. My grandpa also has Arthritis, but he has the kind that comes with age, caused by wear and tear on his joints. He can’t walk very much anymore, taking a few steps, then pausing to let the pain subside, pretending to look at his surroundings or remember something he wanted to tell us. During lunch, he teared up every time he talked to me, and I could feel his love for me through his choked back tears.
My mom told me when we got in the car that he had cried to her on the phone when I was in the coma, saying that he didn’t want me to die before him.
I wish I could say that I look at life differently now, or that I had some huge epiphany when I woke up. The truth is, the little things in life, like breakups or bad grades, still feel big. I don’t live everyday to the fullest, I still sit on the couch and watch movies all day, or spend too much time on my phone. And I’m lucky that these things are true. I’m lucky that I’m able to experience these things just like everyone else, because I’m still alive. I did make one promise to myself, though, when I left the hospital: to not waste time by not telling people how I feel. I tell people I think they’re beautiful. I tell people I’m thankful to know them. I tell people I love them. There are so many things that could’ve been left unsaid if I had never woken up. So I say them while I still can.