My experience as a COVID-negative patient residing on the COVID "hot-zone" unit for five days has given me so much to process. The respect and utter awe I have for the healthcare teams in medicine today and always, my own gratitude for what I have, and most of all...convincing evidence that people truly are good, people.
May 27, 2020
6:30 PM “Female 28 y/o. Chief complaint: shortness of breath, coughing, injury to back from fall while dizzy. O2 88% not stable, applying nasal cannula.” “She’s tachy-really tachy--154 I think-” “BP 158/103...”
6:31 My neighborhood is moving in the wrong direction out of what looks like a microwave oven door. My arms are strapped down. I feel tubes and needles being inserted and it goes dark.
May 28, 2020
3:02 AM “Code Blue ICU Room [redacted]. Repeat, code blue, ICU personnel assist.”
I hear the intercom followed by a cacophony outside my quarantine door. The pros and cons to having a room right next to the nurses station. “Oh no, not [name redacted]! I was just talking to her!” I hear a shrill voice sputtering in the air. I wonder why they aren’t running to the code blue before remembering that this floor, my floor, is the PCU-one step away from the ICU. Through her tears I recognize my nurse’s voice calming the other woman while she dutifully keeps her eyes trained on a screen displaying my stable vitals screen. I am stable, but she isn't allowed to help the crashing patient. “I know. It just happens this way now.” I have only been here three hours.
3:13 They are still in a frenzy at the station, overcompensating for sadness with raucous laughter and promises of pizza. I hear people dropping the f-bomb over and over, desperately trying to scoop out the profane parts of their spirits to finish this shift. There was never a second page.
3:31 My nurses, [names redacted], are coming in half an hour to take my vitals. I should have slept. I know that. But this newfound feeling of being able to breathe with the assistance of 2- then 3- liters of oxygen snaking around my neck is intoxicating. I haven’t seen my chest rise and fall like this since I don’t know when. I am so guilty for not coming sooner. I didn’t realize how bad it was. Certainly not as bad as the beds I was wheeled past when they brought me up to the hall. Rows of empty faces with wires criss-crossing their chests and binding them to beds meant to protect them. Faces hidden with tubes plunked deep down into lungs syphoning off the toxic algae growing inside while they slept for days on end. How many days has that man with the trach been here? Does he know?
4:01 My nurse apologizes for waking me up and I feel like crying. I apologize for being so sick, so contagious, so uncertain, but instead I just thank her for her service. She waves it off, a smile in her eyes behind the gaunt ghost living inside the hazmat suit. I gratefully accept my Diet Sierra Mist from her as she draws more blood. More apologies. And the cycle continues. We are both so sorry.
5:30 The second nurse comes to relieve the first, who cannot find a vein in any of the first five places she tried. We both gave it our best at small talk until the conversation slowly turned into a monologue of sharp inhales and exhales as digging under the surface didn't work. Is there any medicine I can receive for the fibromyalgia in my hands that is being scraped, scythed, and smashed into fragments? Please. The second nurse spares my too-tender wrist and finds a part of my hand I worry won’t ever love me back now.
7:10 I hear them all suiting up outside my room. They were here on time. I am the reason they are going to be late for the next patient. They all need the circular mask, the cloth mask, the face shield, the apron, the booties... oh and I suppose the “normal things”-one resident forgot her gloves. They all have to go back out and start over.
8:27 I am roused from half-sleep by chipper good mornings from a new staff who have come to get my vitals. I am still repeating to myself, “her name is [redacted], her name is [redacted]” as I lose a battle to stay awake.
9:01 She brings me food I don’t remember ordering, but is definitely what I would have picked: eggs (not real ones), sausage (similar), two cartons of milk, and a banana. Get the carbs in before they hit you with steroids, or your sugar is going to spike.
9:03 Here come the steroids. High doses. I can’t use my regular oral diabetes meds (insulin efficiency medicine) because it interacts with the dye contrast from my CT scan last night. I need to be very careful. For now, I appreciate the cool milk on my burning throat and gasp out a breath in between bites, happy that my blood sugar is finally in the 100s for just a moment.
10:15 A woman comes tentatively into my room. “I can’t see nothing past all these masks-sorry it’s my first time with one of you guys,” she says. I nod encouragingly, pretending I was not just asleep sitting up under the thin white blanket and that I don't feel ashamed to be "one of you guys" who might be positive for COVID. She unbuttons my gown for a repeat EKG. Seeing my Nintendo switch on my table she asks if we could be friends and shows me how to go to the friends page. I don’t have any friends loaded on my page yet. She looks embarrassed for me, but I don’t mind.
10:50 it’s hard to get a breath in, even with the oxygen. A respiratory therapist comes to meet with me and lectures me on the medications I am currently taking. “You are too young to be putting all of that into your body. Don’t you want your brain to be healthy?” I nod because talking is too-
11:07 The physician comes in to talk to me. No COVID. I don’t know if I am relieved or not. The elevated numbers from last night have come down a little . The depressed numbers have come up a little. He doesn’t suspect infection, despite my WBC being high. No antibiotics are recommended at this time. He suggests I go for the ultrasound of my gallbladder and was confused to learn I don’t have one. They are still recommending the imaging. No clue about the process on that.
12:30 PM I am spent. After my talk with the physician I spoke with my husband, mom, and mother-in-law just to keep them updated on what I know. I feel for them not being able to see me improve with the extra oxygen boost in the room, but I am also so glad that they are not here being exposed. I am glad they are home resting and doing what they need to do to keep everything running positively at our many homes. Even in isolation, I palpably feel their love and connection wherever I am.
1:07 Neither my blood pressure cuff nor my room phone is plugged in, but with the staff so overworked today, I am at a loss to see how either of these negatively impacts me enough to call away the squeak squeak squeak of sneakers running back and forth across the polished floor outside.
3:00 The lights flicker several times before coming on. A visceral alarm clock. I don’t remember falling asleep, but am now waking up to a numb left arm. My head lolls over to see a blue tourniquet above my elbow. The woman is pinching my skin almost as hard as her own eyebrows. “You want me to do this in your hand or not?” she asks. My hands are visibly bruised from this mornings attempts and blown veins. I choke out that my forearm hasn’t been tried yet. My throat is chalk being scraped off the sidewalk with vowels half-silenced in my raspy, scratchy tone. She finds a needle and got on a search for a usable vein. “You know, your veins are really weak.” She finally says, puffing out her lips, “You can’t tell we can’t do your hands when your veins aren’t well-managed.” I never told her not to use my hand. I ask what that means and I hear a snort. I see the shake of the head. I wish she could see the army of water bottles vying for space on my bedside table if only she would look up. I have been asking for IV fluids to be resumed to help with my blood sugar for over six hours and none have come. She doesn’t speak again, rolling her cart outside and slamming the door on the now-silent room.
6:11 My family has been updated. I talked to my little/bigger brother who has an amazing way of both being his own person and resembling my father at his most exemplary in the medical field, albeit my brother is in animal medicine. He walks me through findings that have come back without explanations and offers questions for further pursuit, just in case. I would be ridiculous to turn his advice down. I am still waiting on fluids and have been instructed to go NPO (no food or drinks) in just a few hours time since possible procedures for today have all been moved to tomorrow. I have not been able to contact the physician, who has been on an emergency call in the ED for two hours. I am praying for him and his current patients while selfishly hoping that the fluids come as my blood sugars enter the 300’s and my insulin pump locks me out of delivering more insulin.
6:12 I think back to this time last night when the life squad got to my house…my mom driving over and taking our dog back to her house since he has been sick and cannot be alone. The quick ambulance ride and several hours in the ED before realizing the findings were out of the ordinary and I would be admitted at midnight on the nose. Getting up to my floor on the PCU and my oxygen tanking into the 80’s before being strapped into a bed and having a mask put over my face…my husband throwing the essentials (and then some) into a backpack and purse, ready to follow. Neither of us realizing our crucial error that he will not be allowed to see me or deliver my things. His insistence in the ED waiting room on having a sterile post-it note delivered to my room in a contamination baggie with his full name and phone number so I can hand it to whoever I need if I can’t talk and the words “I love you” in that perfect, messy scrawl that means his brain is working so much faster than any hands can keep up with. I clutch the note now…the one thing I have carried with me this whole time. I have no other things on my person. Later, he will be allowed to drop my things off for a PPE cleaning to be passed on to me, but I do not know it yet.
6:35 The people in charge of food and dietary were not able to contact me for lunch since my room phone was not connected. I am worried that I may have missed dinner now, too, and wonder how long I should wait to press the call button. I know this shift ends at seven and they sound so busy. I am just afraid with having to go without food for the next 24 hours. Maybe if no one has come in five minutes I will call...
6:43 My nurse brought my fluid bag. I have drunk over 160 oz. orally and my nausea meds should kick in soon. She helps me to the bathroom and begins recording the vitals screen as my pulse soars over any other number up there. I hear an edge of urgency in her voice as she asks me how I feel. “Fine, thanks,” because what else is there to say?
6:47 She finishes her note and asks what I would like for dinner. My blood sugar is still high, carbohydrates will hit my body like a freight train with my insulin pump maxed out, no oral diabetes medication, and the delayed fluids...on top of the highest steroid dose I have ever been given. I ask what meat or vegetable options there are since anything with starch or fruits or root vegetables are packed with carbs. I order chicken salad and a burger with no bun. This is not allowed, my nurse relays with a heavy sigh, hand over the receiver, “because it is too many calories.” I ask what options I have. I am allowed the burger without a bun. Okay, good start. What else? “They can give you a sweet potato and a banana. It is more balanced that way.”
6:58 The respiratory therapist comes to my room as promised. He tells me he is new—he doesn’t know if he needs to be wearing PPE so he wore it in case. I thank him and tell him my COVID case came back normal. He is one of half the population who I can tell is smiling under the mask at this news. Many other hurried "floaters" that have been rushed onto our hall are frustrated, just as we are, that suspected-COVID patients are mixed with confirmed COVID patients. Last night there was room in the hospital in both the hot zone (our zone) and the cool zones (no COVID). Tonight there are none in the cool zones, and we are second class citizens who wish we could free up our beds, but are stuck where we are.
7:02 The shift is wrapping up quickly, but my care team is not letting me down. I am blinking back tears as the kind PCA’s bring my food into my room and get me more oral fluids on their way to clock out. They didn’t have to do that. They just chose to do that. Both of them. Together.
7:03 They found me the last two diet ginger ales. I feel like bawling with gratitude as I start my burger patty.
12:00 Bedtime? There has been a rotating door of gurneys as the some of us are shuffled around for patients headed up to the ICU. I am astonished my nurse was here right on time for my NPO cutoff. She thanked me for paging her 15 minutes before and going over everything I needed so it could be a single trip for her.
May 29, 2020
12:01 AM They are scrambling for PPE and a lost pager. Guess not bedtime yet.
3:02 in my dream my lungs are being filled with rocks as I am sinking to the bottom of the ocean. As I struggle to reach the surface I hear the cacophony around me. My eyes fly open as the dry, heaving coughs continue. I am soaked through with sweat. I can’t breathe. I can’t get a breath in as the coughing spasm grips me from inside my rib cage. I fumble with the call button, blurry from wheezing and sleep. My nurse can’t understand what I am saying but sends a respiratory therapist who gives me an inhaler. “Chica? Can you hear me, chica? Ready, you need to breathe for me. You can do this!” We wait together as I try to stop coughing over her comfort, spitting up sputum on her kind words. Five minutes pass. Ten. Finally, some shallow, "normal" breaths. She keeps stroking my hair as she holds the aero-chamber for me. I can do this. Not comfortably, but that’s not the point. I hear the echoed battle cry from other bodies on the unit and she dashes out to help the next in line clear the dust from their lungs. It will be a long time until the world is quiet again.
4:43 My new nurse, [redacted], said she would be right back to take my blood after my coughing attack. I am afraid to lie back down since she hasn’t reappeared. The silence is pressing in.
8:02 I am trembling up and down under my thin blanket. They never came to do blood-but I hear a tentative knock on the door. A PCA comes in quietly and folds another blanket over my stuttering body. Since I am not allowed any fluids I am not sure if she hears my croak of a ‘’thank you.’’ But I see the tell-tale mask-raise that means she is smiling.
9:47 My day nurse is the same as yesterday. She told me they could see I was in distress last night looking at my O2. I am confused why my request for more oxygen was denied all night. She is also worried about my IV line-my arm is hot, swollen, and puffy. Several nurses come in to check and all agree-call the charge nurse. The charge nurse gets a mostly normal flush and gives it the okay. Later they will realize there was a perforation and move the location of my IV.
9:50 Somewhere in here Dr. Resident McDreamy enters and gets my updated story. He is the first one to offer to look at my back when I reiterate my pain scale from falling before coming in. I feel exposed when I see him wince as his gloved hand tries to find the source of the damage under my gown no one has tied shut yet. He informs me there are contusions (bruising) and he can feel my muscles clenching as a protective method against the exam. When I try to speak no sound comes out and it is like serrated knives being dragged along.the back of my throat. We won't know it until I see an ENT outpatient, but there are lesions on my vocal cords on the left side from all of the coughing my body has been doing. He gently offers me a heat pack and gets it on the right spot for my back. He promises to put in an order for a lozenge before lunch at least. There is a fleeting moment of humanity that passes between our eyes and he says he will check on me.
10:05 My nurse asks me where I thought she would have the best luck drawing blood from. I appreciate her giving me some choice in a choice-less situation. She got it the first try with no pain at all. The anti-coagulant shot in my belly is another matter, but it is quick. She gathers all my correct medications swiftly and we both admit our relief at being paired again today. She starts to offer me my pills with a Diet Pepsi and Diet Sierra Mist. She remembers from yesterday. I see her smile falter as she thinks about the ultrasound she has been advocating for so hard and realized she has to give me water, but promises the soda as a reward later. I feel grateful tears in my eyes and I am reminded of Maud’Dib giving his water even when he had none as a sign of respect. I do not know which of us is Maud’Dib, the Kwisatz Haderach my father told me stories about on my last hospital stay when he was still alive.
10:40 Still no ultrasound. I try to call my husband, but my voice is totally gone. He holds it together as I tried to answer yes/no questions. My left arm won’t work properly as a result of the IV incident. Each. of. these. letters. I. am. typing. with. one. finger.
11:00 Wake up to ultrasound tech coming into my room. She tries to be as gentle as possible, but needs more extensive imaging as no one had told her I had no gallbladder. She apologizes and told me that there had been no reason to be NPO without a gallbladder for this scan. “At least you know for next time.”
11:38 AM I don’t know if my neighbor is in the process of dying while I got my ultrasound. I could hear the nurses begging her to breathe and the fits of coughing followed by long, uninterrupted beeps. Eventually, it seems to calm down. I am sending what energy I have left through the wall.
12:15 PM The doctor comes in to report I am healthy despite high liver enzymes and no read on my ultrasound. All of the consults we discussed yesterday have been cancelled, including the most important respiratory consult, despite my still relying on 2- to 3- liters of O2. I will be going home unless there is a John Hurt style alien showing up on that ultrasound. Why am I still on the COVID unit?
12:43 My nurse comes in to tell me I am allowed to eat and drink, but they are no longer serving lunch and they are restocking all the fluids on the floor right now. I remember taking my pills this morning and holding the small sip of water in my mouth even as the foul tasting pills melted into pools on my tongue just to get some liquid on my parched tongue and throat.
1:04 I wish I could hug my nurse. She has already been here six hours and looks more tired than even I do. She sees me struggling, but stable. I hope that I can at least not make her day harder. When I reach up, she takes my hand and tears slide down her face as she takes a 30-second break from charting notes.
2:15 Several things happen very quickly. My ultrasound is not normal…or is it that it might be normal, but it was just blurry? There is an uncertain un-explanation and I am told to wait to wait to eat or drink because I need an emergent CT scan now. I am so hungry.
2:17 My “snack” arrives, as I did miss lunch, and I have a staring contest, fixed listening to the silence surrounding the beeping boxes in my room.
2:32 I am wheeled off oxygen down to the lowest part of the hospital and parked behind a long line of wheelchairs. It feels like a parade of the damned. There is a silent, eerie festival in the cold basement of the hospital as we silently wait our turns to be taken into the loud room. I read the sign on the door to my immediate left, “formaldehyde.” My eyes snap back to the mop of black hair on the head of the man in front of me, and I try to pull my mask closer to my face despite the difficulty to breathe.
4:01 “Are you Ronald?” I nod my head. I have been in the hallway outside the CT machine for over an hour waiting for transport to take me back to my room, my insulin pump, and my oxygen. I am seeing double and I can taste the tell-tale sugar in my mouth signaling ketoacidosis storm clouds could be rolling in. I am shivering in the still untied gown with a blanket flapping around my ankles from the vents in the floor. My IV line is occluded. The CT techs are sprinting gurneys in and out and show me which buttons to hit to silence the alarms. I am worried that I will push the wrong one since I am having a hard time reading the letters. It reminds me every minute with a loud beeping. “The woman looks me up and down and bursts out laughing. She says again, “You Ronald? Or you just wanna be Ronald so I can take you back to your room?” I nod. “Shoot, well Lord of Mercy if that don’t just beat it all boo boo! Okay, well I don’t think you’re Ronald.” Resigned, I shake my head.
I am not Ronald.
4:03 I am finally back in my room after a long CT with contrast again. My CT from two days ago had contrast and was just a picture of my lungs. Maybe I did manage to pull a John Hurt after all…I am starting to think that I may have jinxed myself as I am told by a PCA that I should order dinner since I am staying overnight.
4:10 I connect with one of my best friends over the phone as I try to settle into a bed that has been resisting me for about three days now. She offers to "Paris Geller" me out of here. God bless the Gilmore Girls. We do some accents, albeit mine is overplayed with a thick Janis Joplin chain-smoker sounding rasp and I leave most of the talking to her since it is so difficult. She says my voice is perfect for NPR.
4:46 My beautiful, talented nurse, [redacted], comes to check on me as we close in on her last two hours. She asks me my pain score and immediately forgets as her fingers hit the keys. “I’m sorry-“ she starts, before I ask her what her pain score is at the moment. I am happy that my voice is working at least a little bit again. Her eyes crinkle and she takes a breath as her phone rings. She picks it up, puts it back in her pocket. I can hear someone shouting her name and moaning down the corridor. “Don’t worry,” she sighs, “Just, everyone needs bathroom breaks today and I can’t go fast enough.” I ask if It would help to take mine early right now before she connects my next bag of fluids to the non-perforated arm. She nods and cries.
4:58 My room is flooded with water from the bathroom after my toilet exploded. I swear I didn't do anything weird.
5:16 PM I am hooked back up to fluids and am back on my bed. I have not been allowed to go off bed-protocol since arrival. Maintenance is overwhelmed so there are about 30 towels on the floor leading from the bathroom to the corner of my room. Everything smells like well...you can probably guess.
5:20 I swallow, hard, trying to clear pain out of my blistering throat. I get the attention of the PCA who sees my good arm has turned a blueish-yellow as the blood pressure cuff does not get a read and continues to fill. “Oh shoot! Shoot! Shoot!” She yells and rips the velcro off. I feel the surge of blood back into my fingers. She tries again, same result. After a new cuff is located. My blood pressure is rather high now.
5:24 “Hello? I am trying to reach Proctor and Gamble? Yes?” My room phone rang so I answered, thinking it might be a cleanup crew. I croak out my name and am met with a thick accent, asking to speak with the manager. I inform the disembodied voice that he has not, in fact, reached Proctor and Gamble, and definitely not a manager. I apologize and hang up. I am frightened of what is going to happen next at this point.
6:27 I was right to worry. I was surprised to be given my discharge papers as I was gulping for air and getting my O2 up to 94% when my nurse brought the document and I signed them. As my case worker and I had agreed, I asked to be supervised for a walk before actually having my husband pick me up. While walking around the COVID “hot” zone area isn’t my usual exercise regimen, it was a good idea in this one particular instance since we found that my O2 did, in fact, plummet into the high 70’s before I swayed on the spot and she steadied me. I was told later my heart rate was somewhere in the 140’s for about 30 minutes afterward.
6:29 I am now sitting in my room, alone. I don’t know if they are forcing me out, or if I am allowed to leave. I don’t know if they will force me to stay, or if I can beg them to stay.
6:30 Doctors flood the already urine-flooded (still not cleaned up) room and quickly tear my gown off. One is asking me questions while typing in to a computer. He promises to call my mom and fill her in on my “changed health status.” I hope someone tells me. Electrodes are applied and an EKG is run as I answer affirmative to the tight knot in my chest. Tests are run and I am told to keep breathing normally. First, no. That is not the way to EVER get someone to breathe normally. Also, what does that mean? Paradoxes for your crises, this way please.
6:32 Toilet guy is back, tells me he is so sorry, but is not permitted to fix my toilet before the janitor cleans up. Heart guy tells him we are preoccupied.
6:35 I am ashamed. This is just too much. I feel tears sliding down my hot, sticky face and hitting my mask. I know that there are people so much sicker in this hospital, on this floor than me. But I am scared now. Scared of not being believed, scared of what they will find. Scared because I cannot see my family or use the bathroom even though I am having an awful period. Scared because I am on the COVID floor even though I am negative and no one will keep my door shut and PPE is now not being used in my room. I try to get the tears fall unseen when I hear him clear his throat. “I’m sorry-is this a bad time? I am here to do your chest x-ray.” This poor man is in full PPE and is parked steadfastly at my door. I apologize and he waves it off. I didn't know I was getting a chest x-ray. “That’s alright,” he assures me, “None of this is normal right now. Let’s let the science do the talking. All you have to do is sit right there.” He does my x-ray kindly, but efficiently. “Is there anything else you need, now?” He asks, stooping just slightly so I can see past the glare on his face shield. “Could you please just close the door for me, [redacted]?” I ask, blinking. He smiles and gives me the peace I need to process for a minute alone.
7:24 Ever the tenacious one, toilet guy comes by twice, no one has mopped. We share a mutual look of sorrow at the lack of toilet for him to attack.
7:38 “Lovebug, can I mop up for you?” I turn to see a young woman standing in my doorway with a mop and squeegee. Thank goodness. She cleans up the bathroom mess and the 20-odd bath towels carpeting the floor. “Anything else, love?” I shake my head and thank her.
7:40 The doctor who ran the immediate tests after my bad flareup has come to the conclusion that my main diagnosis is anxiety (read: 2020 has a version of hysteria too, just drug the women, that always works) so I am now taking a one-time anxiety medication to help my body relax. Okay, doc. Bring on the null hypothesis, my good man.
7:47 I am not allowed to use another bathroom on floor since they call this "the dirty unit" and it is hard to keep things sterile. I have been asking for roughly 4 1/2 hours to relieve myself-since I am getting slightly more than 9 gallons of fluids between my IV and orally. I offer to my flummoxed nurse that perhaps there would be a bedside commode somewhere I could use. She was referred back to my toilet chamber of hell (if you wanted the entrance to the Chamber of Secrets….these aren’t the ones you want, I promise), found no commode in the toilet and is off to find one now.
7:55 She did not let me down! The precariously placed commode is here, along with backup nursing staff. I can tell that they are so overwhelmed. Although well-intentioned, she dashes so quickly that she is out the door so even though the commode is now but a few feet from me I am trapped. Here’s the thing…I am not allowed out of my bed unsupervised or the whole fire brigade is summoned to my room. Stuck, I realize that my call button disappeared with my earlier discharges (I was accidentally discharged twice). I wait a few minutes until I feel I truly might soil the bed and call the number on my white board to get the main hospital line. The operator gets me through the hospital system to my floor and the charge nurse who was here on my admission enters. Seeing the current situation, she calls the toilet man (this feel so irreverent, but it was how he asked to be referred to…probably should have mentioned) and allows me to use the commode. Once. Twice. Three times and finally I feel comfortable sitting back down on my bed, relatively.
8:23 My dinner comes and they have run out of gluten-free food. I would say anything beats hospital food, but bizarrely, no hospital food does not beat hospital food after the 24 hour window. How is that for logic of the seriously twisted? A note was enclosed on an empty tray reading “We’re sorry.” I ask my PCA if I can try to get something now, specifying again that I have celiac disease and Type 1 diabetes and am on a high dose steroid so it must be very low carbohydrate and no gluten. Meat is good, cheese is good, most veggies are good…I trail off as she tears up. “They are closed now. There isn’t anywhere to get food.” We call the number together to check and yep, she was right, it’s closed. I have had just a small bite of chicken salad this afternoon since I was not allowed to eat all of last night and today during my imaging. It has been so long since I felt satiated. I ask with a tight voice, “Could, maybe, my family bring me something?” She allows it. And my sweet husband gets to work on a high BG meal. I am actually secretly a little delighted (although starving), because my husband is an excellent chef and can cook a five star meal for any blood sugar level. One of the many reasons I married him. I really hope he married me for my writing-health is a bit dicey these days…
8:52 The toilet man is here. And allowed to fix. The. Goddamn. Toilet. Thank every god, goddess and high priestess in the kingdom.
9:08 “Fixed?” The charge nurse asks. “No,” toilet guy replies. “I never wanted to be a plumber. It’s toilets like that that make me a bum plumber. Can you move her to another room?” No other rooms offer themselves up, unfortunately. Team Commod-o it is!
9:42. Remember that fire brigade that I brought up? Well, with the going theories about why my heart is racing when I stand up, we have now had a second instance to disprove the anxiety approach. Unfortunately, it just happened to be as I was using the commode. I even followed all the rules. I told them it was possible my heart rate would elevate and I called before moving back to the bed, but no, a sweet parade marshaled in for what I assured them would not be nearly as entertaining as what they were expecting. At least, I hope not.
10:00 Finally able to sit up with some degree of comfort and call my husband to debrief about the goings-on here and there. Maybe a discharge tomorrow morning…my PCP has been so diligent in following my tests and diagnostics while I am here in the hospital. I finally look at my phone-over 200 texts, calls, and messages. Well, that is sure a happy thought to go to bed on. Thank you for all the love, patience, and support, guys. I’m sorry that I haven’t gotten back to you faster…perhaps this helps a little with the details. Both the ones you wanted, and the ones I felt it was my moral humorous duty to report. Ready for meds and bedtime at midnight if we can it a second go tonight, but also ready to adapt and overcome if that’s what needs to happen. Preparing, not panicking…
11:11 Make a wish-let’s see…I wish my heart rate doesn’t fly up as I use the bathroom. They have to come in and unhook me to walk me to the commode. So far, so--oh boy. I sit, but the damage is already piling on from standing for that split-second posture change. They keep kindly trying to give me privacy, but my alarm goes from yellow to red as my pulse soars over 160 into question mark land. Well, that’s why you aren’t supposed to tell people your wishes, Allison. You knew that. Now everyone is getting yesterday’s dinner and a show so I can finish up. I laugh, which seems to catch them off guard, but my nurse comes In. “Don’t worry. She just does that,” she tries to reassure the residents. She dismisses the worried crowd, one man only venturing so far as to peak his head into the room.
May 30, 2020
12:01 AM Nurse [redacted] brings the pain medication that will hopefully allow me to sleep a few hours to take on the dawn. We are now on a first names-while-pooping-basis kind of relationship.
12:47 [Redacted], the respiratory therapist who soothed me last night is back. She bounces in with the same energy. “You lookin’ good, babe!” I tell her how much she helped me and she makes a motion to clutch her heart saying, “Oh you got me right there! You know we are the same age? I am just rooting so hard for you.” My heart rate monitor spikes and I laugh with her that she got me in the exact same place. Palpably. It turns out she knows my friends, you know, the true blue, tried and true friends because she lives in their area. We agree to meet up sometime--just not in this hospital. We agree I am heading on to the next great thing and I make a pact to keep her safe from the outside as she has protected me on the inside. “We are the real 90’s kids, girl! OG. Keep it going and you gonna change the whole world if you aren’t careful!” We fist bump to make it official.
4:52 I wake up drenched again, but my eyes snap to the clock and I am so relieved that I have gotten some sleep at long last. If I wasn’t so determined to get out (moved to another less intensive ward, another hospital, or discharged) to get someone my bed that I know someone needs, I might start to think about how I am starting to get this down. I push my call button and I am confident that it won’t be long until my nurse is here to help me out.
4:58 She is a freaking hero. My IV line ruptured and she caught it. There may be saline all over the floor, but my arm is clamped off and out of harm’s way. Thank you, [redacted]. Thank you.
7:31 I spent time getting back to the incredibly loving messages that have been streaming in since Wednesday night. I am so moved and my nurse has to check on me when my heart rate rises. I try to compose responses that all of you kind humans deserve for your investment of love and support in me. As I wrap up, nurse [redacted] comes in to introduce herself and check in.
8:14 Time for my hourly blood draws (decided early on not to log all of these), the high dose steroids, and the “tummy shot” I would call a "belly bazooka." But, hey, that’s just me. [Redacted] says it will become her go-to description and she will bring my other medications as soon as she is allowed.
8:32 Replacement, replacement toilet guy comes and works on the toilet. “It’s bad,” he says. “Can they move ya?”
9:07 The resident doctor came in guns blazing with discharge papers. Someone definitely got their Wheaties today. He explains to me what a pulse is and why it is important to have one. I promise, I really tried guys, but the third time he called me Stephanie was just one touch too far. I gently ask for my case worker to be brought in to have a thorough debrief before sending me home. It appears the resident would like a third CT scan in as many days. My advocate helped convey what I was saying since my voice is now so hoarse they need to lean farther in than is allowed to hear me. She saw that as a potential danger sign for release so he toddled back to the team. I am no diplomat, but in the wise words of James T. Kirk (these should definitely be stardate entries), “The best diplomat is a fully stocked laser bank.” Agreed, Captain.
9:20. My lovely nurse brings meds, food, and what she could to help with having a period in a hospital while not having a working bathroom and being pumped full of fluids, unable to leave your bed. I would like to donate my salary to her and then kindly ask the administration to triple it for her.
10:30. The attending comes in and is startled to see the human waste still on my floor. I am starting to think that this might actually *not* be a tactic to compel me to leave. He assured me that 24 hours was too long to be in a room with urine and feces on the floor, so I would likely be moved by this afternoon. I say that makes to me. He also helps me reach a compromise since there is some red, white, and blue tape around when consults can come to patients’ rooms. The ENTs (ear, nose, and throat) are all the rage right now, so in lieu of a CT, a speech and language pathologist is going to come this afternoon to find out what happened to my throat between arrival, admission, discharge x2, admission, discharge, and my last admission that has constricted my airway. If (very likely) they find an issue, then an ENT consult is the next step. Although he uses the words “easy to obtain,” I am just a wee bit gun-shy given my access to food and plumbing is still not fully operational.
10:47 I was called for my lunch order! I am optimistic that today will be better in the food department since it is a weekend now…hold the phone it’s ringing again as I type….
10:48 Food services back, yikes. It appears I have been getting small amounts of gluten the entire time I have been here since all I have eaten has been chicken salad and bananas. Don’t worry, the bananas are still fine. Well, I still have the loaves and the fishes that my husband somehow magicked here overnight, so I know we can make something work. OPTIMISM IS GOING TO WIN.
12:05 PM The CT tech showed up while my nurse was getting blood and giving me a bathroom break. It seems there wqs dissent among my care team about which procedures were best for me diagnostically so the orders are a bit jumbled. No one has heard from Speech and Language Pathology or the ENT. I have been prescribed one throat lozenge every 8 hours (as needed) starting an hour from now. My nurse tells me that I may be changing units without having a working bathroom and being negative for COVID. She brings me a cold soda to try to ease some of the flames in my throat with bubbles and is impressed to see my blood sugar in the mid 100’s.
12:07 Speech may not be available until tomorrow. At this rate, since I have an appointment scheduled with our family ENT (thanks to my mom and husband on the outside) it might happen at the same time either way regardless of being in the hospital. Here though, I am so close to all the contagion and without food or a working bathroom. She promises to go talk to the charge nurse, but first looks in my eyes and feels my forehead. Not a medical move, necessarily. A motherly one. “What is your pain score?” She asks. “I know it’s not time for medicine yet,” I try to say. She shakes her head and asks again. “It’s quite high,” I manage, faltering on the the vowel squeezing through my throat. I can see her tearing up. “How are you?” I ask. She squeezes my shoulder and I see her shoulders shaking as she walks out to try and find the charge nurse.
12:20 When she comes back she tells me that she has kids. I ask how this has been for them. Hard. What about her? Not too bad, just…also hard sometimes. She sits on my bed for just a minute and rubs her temples. I feel the bed buckling under her burdens even as she does everythins he can for me. She turns my light off so I can try to sleep. She tells me I am the first one to thank her this month and big tears well under the rim of her glasses beneath the 3M N95 and surgical mask with face shield. I hold her gloved hand while her phone rings.
12:30 Alex brings lunch to me at the hospital when it is true there is nothing I can eat when the tray arrives. I have to tell the same PCA three times which exit (Emergency) to pick it up from even though she requested that exit since it is closest to her station.
12:50 He brought me homemade egg salad, burgers, and amini ketchup jar. Guys, a mini ketchup jar. He included pickles separated and cut up since he knows I love them but probably knew they would scald my throat. This is love. This is pure, pure love.
12:57 I am already done with the food.
1:03 Another person comes to get me for my CT scan and brings a bag of fluids. “They want me to give you fluids to protect your liver sine it can mess with it if you get a CT-” she starts. I know it isn’t her fault. I have never seen this woman before, but I feel my face getting hot. I can’t speak, my left arm is still too swollen to move from yesterday, they can’t feed me, I am not allowed to use the bathroom, and there's still grossness all over my floor and now the doctor cannot just do me the common courtesy of following through on his own orders for the afternoon-the only thing that was holding up my discharge this morning. She leaves the room as I try to weigh the pros and cons of yet another CT scan.
1:05 The same woman re-enters. I tell her that I am just not comfortable and relay what the doctor said to me about potential kidney damage and general radiation. She reads his orders. I tell her it is for my throat, and that while she has not been here for the saga, I have been trying to communicate with the doctor to get clarity. I have no advocate available and she cannot hear my voice because my throat is so constricted. There is a veiled threat not to go AMA (against medical advice) and tells me I may be moved because they need the beds for people who will be receiving proscribed treatment. I don’t correct her to “prescribed.” I feel tears on my face as she slams the door.
1:23 I try to change my beeping CGM (continuous glucose monitor) that is my main informant on how to handle my blood sugars. It has run out of time and is no longer reading my blood glucose. My nurse told me she was not allowed to touch any of my diabetes stuff. It said so in the packet I signed in the ambulance ride I don’t remember. So I clumsily use my one arm to jostle the tubing, the blankets, the everything away and try to get a clean line in. I see that Alex threw two changes in. Probably “just in case.” I can’t love him enough.
1:24 While I am changing my sensor, another person I do not know walks in with medication. I am very appreciative, but she cuts me off. “What is this for?” she asks. I tell her it is prescribed through my regular doctor and start to give my name and D.O.B. S he tells me to speak up. I try and sound bad. She makes me list what hurts. I lie. I have to. Too many things hurt and she can’t hear me. I limit it to my throat, my back (from my fall), and that I have fibromyalgia. She wants a pain score for each. I have a sigh, knowing none of this is her fault.
1:52 Even though I am not wearing it anymore, the oxygen tube had been so tight (they were out of the normal size so I think it was a pediatric one) that I can feel the small cuts on the inside of my nose and the ghostly presence of the lead outlined on my chin although it has been off for a few hours now.
2:14 My beautiful, dutiful nurse [redacted] comes in to help me get to the commode again. She asks how I am feeling and seems nervous. Her eyes are flicking to the panic button I see next to my bed, the one I used to pull for patients who would not comply. “Okay, a little confused,” I say. “Can you tell me what’s happening now?” I ask it slowly and deliberately, trying to demonstrate that I am not going to suddenly try to movie-style rip out my IV and "be damned" the legal papers. Although, there’s an idea...we’ll see how things go from here. "I know my doctor wanted me off of bedrest to just walk around my room so I don’t get lightheaded when I leave like last night and then I am re-admitted again and that there is disagreement surrounding the third CT.” “Yes,” she says, biting her lip, “But your pulse is so high when you stand up that we can’t legally let you do that and the doctor isn't sure about the CT yet.” “So it’s a catch-22 on both the CT and calming the heart rate?” I ask. She sighs for me and nods. She tells me I am about to be transferred to another floor that is more general.
3:15 A new resident comes to my room. He is covering for my team who I still have not seen since this morning. He tells me that the reason the CT is so contentious is that the resident team has been back and forth on the risks and benefits. We call my mom on speaker phone as he outlines everything he worries will happen should we try another CT as well as his concerns about a potential health problem not yet evaluated. My mom agrees to his terms of a “wait and see” overnight. I am heartbroken to not be going home and not have any further answers.
3:17 I try to finish the conversation with my mom, but I just can’t. I just can’t and won’t. I sob alone in my room for twenty minutes, the heart rate monitor beeping wildly out of control. F*&k all of it.
4:01 Head bent over drawn up knees I heave for air, breathing in the foul smells of blood and urine stuck to my legs from the last four days. I still have not been able to shower, to brush my teeth, to clean my face except with the hand sanitizer I sneak out of my purse before trying to eat. I feel disgusting.
4:21 I really felt like I was settling into a good cry-whether it’s the cumulative six hours sleep I have gotten since admission four days ago, the lack of food, the 15th day on a power steroid, the 15th day of sky high blood sugar, or the fact I am staring at discharge papers from last night and stay in bed orders from tonight. Or. For the family who I just heard have their last goodbye through the wall with a woman who I have been rooting for all week. I don’t know you-well, that’s not true. I know you. You don’t know me. I don’t know your name and you don’t know mine. I was the girl that tapped my knuckles against the wall three times after I heard you do it. I heard when you made decisions for yourself. I heard when decisions were made for you. I am praying and crying with you and your family and healthcare workers. “Calling time of death…” I stick my fingers in my ears even though I already heard it.
4:44 I am still crying as there is a knock on my door. I do not realize it yet, but it is the turning of the tide. A girl definitely no older than me with a very slight frame enters. Her beautiful, poofy red hair is pulled back behind black-rimmed glasses. “Oh no,” she says, approaching the bed and crouching down to see me at eye level. “It has been a hard day, hasn’t it.” Well, that does it and I melt down, crying and apologising while trying to clean snot and tears and blood with an alcohol wipe. “Oh sweetie, hold on. You are just fine. Let me get you some tissues--there are none in your room. I will be right back.”
4:45 Tissue in hand, I tell [redacted], the kind redheaded woman about my day when she asks. I tell her I know everyone is trying their hardest, but I just hit my breaking point for anxiety, uncertainty, and disappointment. She says she is so glad to hear the whole picture. She is the speech pathologist that works here. As I feel a little calmer, and much more understood, she performs some speech therapy tests with me and reassures me about the torrents of emotion coming out of my eyes and heart alike. While she reminds me she is not a doctor, she says if it were her, she would not have had the CT and believes that with everything that has been a part of this turbulent storm for the last few days may be aggravating my throat. As we wrap up, my floor finally clears me to leave to another unit. A non-COVID unit. It is only about half an hour until we can go.
5:19 “There are so many twenty year olds on this floor tonight. Oh my god.” “Right? I have never seen this many young people on the floor at once.” The nurse rolls me past galleys of young people all peering out. I give a little smile before remembering my mask. I wave and get a few back. People are good.
5:20 My new nurse, [redacted], gets me settled into my room. She tells me my husband can visit this floor since-(here is where I think there was a great explanation, but I already had my phone in hand). No lead lines for my heart, no O2 monitor. I am free to use the bathroom as I want to--and it the plumbing works. I get a fresh gown and she tries to hide how appalled she is at the amount of bodily fluids all over the gown and me. I get a fresh gown and clean sheets. What a woman--I thank her profusely before going alone into the bathroom.
5:30 I think I have buttoned my gown correctly on the sixth attempt until I realize I never let the lead line for my IV through. I wriggle through the small circus tent cut from the design of some kid’s candy wrapper and finally feel it snap as I hear a male voice outside say, “Do you need any help in there?” He’s here.
5:32 It’s evening, so we don’t have a lot of time. We have to stay distanced and masked, but he is here. I am so happy to see my husband. I hardly notice the other housekeeping things that happen as we both try to catch each other up. We both have pictures. Me, of what my ward looked like and who I have met. Him, of all the home projects he completed in the last few days. The nurses are smitten with him. So am I.
6:45 “It is 6:45. All visitors must leave the building by 7:00 PM. Repeat: It is 6:45. All visitors must leave the building by 7:00 PM.” Goodbye is a little sad, but I can see him tomorrow. As he heads out, I close my gloved hands over his for just a split second. I remind him of our first year dating long distance. Tomorrow is one I am excited for.
7:42 My nurse aide, [redacted], just came by to check my blood sugar. Her voice is so quiet I feel we are almost speaking at the same volume. I told her I just saw the news for the first time in a week. I see her stiffen. She is at work, she has to be a professional. I ask how she is doing. She just says, “I’m here.” I say that it’s crazy enough with a pandemic-we don’t need people adding ignorance and that I am here if she needs to talk. We never used any words to define race, but I asked because being colorblind is not an answer. Not a solution. Not a choice. We made the choice long ago to see the difference and value one more than another. Now we need to see all and value all and provide the resources to begin to build a bridge to fix the chasm of a divide that white history has caused.
7:57 [Redacted] introduces me to my night shift nurse, [redacted]. She is every bit as warm as all of the kind people who have been taking care of me. She reminds me of Amy Acton and I tell her so. I already feel so much calmer. There hasn’t been a single code. The most eventful thing so far has been the person who decided the bed alarm is a silly suggestion. I feel for [redacted] as I anticipate she might get some exercise to and from that room tonight.
8:32 I page my nurse, asking if I may go to the bathroom. She can’t hear my voice very well so she says she will head my way. Boy is she speedy! She tells me I am off bed protocol and I may pee in peace. I am so grateful that she took the time to come and check on me as I stood up and made some judgements before deciding, but also that this is the decision.
8:53 There is the bed alarm again. I hear the occupant of the room swear and I smile just a slight smile because they sound strong and healthy, just irritated. I think I may have a nurse sighting soon.
9:12 This wait for medication feels like the longest yet. Singing some bizarre mix of Hamilton, Frozen, and Les Mis in my head to pulls me over the finish line.
10:15 PM My friends are all waiting to video chat with me when I get on my phone. I am allowed these virtual visitors on this floor. As I see their faces pop up all in one big video group, I can feel happiness crease my eyes and I smile.
Sunday 5/31/2020
12:56 AM I can't sleep. The computer screen is blinking bright blue. I know it has been so, so many hours since I have slept. I need to sleep. Maybe that is why I can’t--too much pressure. I remind myself that resting counts for something too. I jostle the pillow, the bed adjustment and lie my head back. I got a half hour that first night, then 2 ½, then 3 ½...maybe if I put on some music...I start listening to some of Dad’s favorites and curl up in my husband’s hoodie.
5:44 Oh man, it’s cold. I roll over on my side and sleepily peer up at the clock. I must have fallen asleep-I am learning! I lean over to call my nurse for my morning routine.
6:01 My nurse, [redacted], has been keeping an eye on me all night. She tells me that she checked in an hour ago, but didn’t want to wake me up since she thought I could use the rest. As she pulls the medicines together she says she believes I am going to be discharged today 50/50 chance. If not, she will be the one back tonight. If I needed anything to make me feel more at ease with the uncertainty, that was it.
7:03 My nurse tells me that she sometimes loses her voice from having to help her kids. I ask how old they are-12, 8, 6, and 2...wow, what a sweet and strong woman. She asks if Alex and I want to have kids and says she can see Alex being the best, most supportive dad. She says what a joy it is to parent with someone you love and that our kids would be so lucky and so loved.
7:20 The lab phlebotomist arrives. She finds my vein the first time and quickly fills up the six tubes before moving to the next room. Still not sure I even really felt that poke...
7:30 I told Alex last night when he was lingering in the door that the next time the sun came up he would be seeing me again. I smile at the sunshine washing over my computer keys and wait with a warm heart.
7:31 Okay, I am too excited to wait. I go digging through my Spotify playlist to find something I can listen to and stumble on my “Fighter” playlist.
7:35 I feel strong. I gather my backpack and a few other sundry items and go to the bathroom and brush my teeth for the first time since I have been here. I clean my face, put my hair up. Even throw in some deodorant for good measure. Oh man, I feel so much cleaner.
7:58 I feel my heart beating fast. Doctors start rounds in two minutes. Game face on. I am worth more than just my perceived gender worth. I will not back down on what I need to know.
8:02 My new PCA [redacted] comes to test my sugar. 161. Boom. Killed it with the basal rate last night.
8:33 I hear someone check on the woman next to me. The woman begins hacking up a storm and asks for a coke. “I brought the ginger ale you asked for-“ starts the health worker cut off by more coughing. I hear the patient moan. “I haven’t seen everyone who needs medicine, but I can get you more drinks later really soon. I promise.” The health worker says. The woman starts to cough louder. “Let’s do this-let me see what your oxygen is like right now she says, do you mind which arm I use for a blood pressure?” I can tell she is trying to give this woman some sense of choice in yet another choice-less situation and my heart hurts for her as she tries to empathize with the patient. When she offers the woman pain medicine the coughing stops abruptly. “Okay,” the patient responds. “When did you start coughing?” asks the health worker. The coughing resumes. “I dunno...” “Okay, we’ll we are going to take good care of you.“
8:39 Rapping on my door interrupts my fingers typing. “Dietary-oh I love your computer!” A kind healthcare worker brings my breakfast in. I thank him and ask how he is doing today. He tells me that my Harry Potter Deathly Hallows sticker is what he needed to see. “Us queer folks are having a time right now, well everyone is, huh?” I agree with a small laugh. I immediately check myself and ask pronouns. She looks taken aback and says, “she/hers.” I assure her that if she can seek out beyond the horcruxes that’s how you destroy them. She laughs a big laugh and we wish each other a beautiful day.
8:50 The woman next to me still has the same worker with her and sounds like she may be trying to make herself throw up. I hear several pairs of feet and she gets some help to help. We’re all in it together, one way or another, now.
8:55 Dr. McDreamy returns! I do actually ask for his name and he rattles of a long last name with several diphthongs and quickly says, “or Nick.” I ask which one he prefers and he explains he is from a French Canadian province, and says that Nick is fine. He starts to talk about my plan of care. What I felt was real and reflected in my lab numbers, he validates. I needed to be here for my oxygen saturation and to monitor all my labs as my body rested and multiple levels of inflammation came down. He smiles and says that I look excellent compared to Friday. I tell him I know I look good. He laughs and says that he will miss me, but he wants to let me go home. We circle back to his French-Canadian roots and I recommend the band "Le Vent du Nord"--he says that will be an active part of his lunch break. When I tell him I am comfortable off oxygen and walking around he is thrilled.
9:10 [Redacted] came into my room with a big grin on her face. “I just have to tell you,” she says, like it’s a secret bursting out against her will, “I went home last night and told my husband all about you and your husband. Don’t worry I didn’t use your name.” I smile. She goes on, “I told him you two had been separated with the COVID and all and my husband is an NP and when he heard how long you had been married, see we’ve been married twenty years, he thought you guys were just the sweetest thing. “ She says that when Alex arrived he had a “flouncy, bouncy happy walk,” swinging her arms and bouncing on the balls of her feet for effect. I refrain from telling [redacted] that [redacted] had a thing for Alex’s “piercing blue eyes.” Eyes are the most emotive thing in the hospital right now, with almost everything else guaranteed being covered, I think. I do tell her that I am willing to bet money that Alex will be here in the next ten minutes since they just opened up the visitor hours. She swivels her head and says, “I don’t think it will be ten minutes,” as Alex walks in with a bag of D&D books, food donations for the staff, and food for me.
9:20 My voice is barely coming out at all now, but I am pushing through it because I am so happy to be in the same room as my husband. You think it is a good idea to keep me in isolation for days, then allow my husband in after trying to take my voice from me? Nay, sea witch!
9:56 The attending comes in and meets Alex. After a quick exam, he says that I am ready to be discharged today with follow up visits planned with several doctors. The door has not even closed before I throw both arms into the air with relief.
10:10 It turns out that [redacted] knew, and worked with, my dad. She said my dad was “the really good one who brought in all the kind residents.” We are just waiting on discharge papers to remove my inflamed IV at this point, so....likely after the end of the pandemic.
11:07 We are listening to music and trying to contain our enthusiasm about being allowed home while also conserving my energy.
11:38 My female janitor is venting about her boyfriend, six brothers and father, who she calls Neil. She says it’s just like having sons already. “My daddy calls me, what’s the google password? I’m like, Neil (her dad) I wrote it down. My boyfriend he don’t even know what’s happening.” She explains all of the minor dilapidations in their relationship-tester apartment and Alex and I are laughing as she describes his quirky way of expressing what he needs. Apparently he is looking to lease a second apartment with her in Vegas. We get to hear all about their future plans when she graduates in December, which, in this order include: 1) her boyfriend not having wet feet in the shower 2) owning land on good Southern dirt and 3) staying away from people. She is a bundle of energy.
11:45 [Redacted] is back to do my lunchtime blood draw. I tell Alex how, among all my connoisseur-ing of blood draws, she is by far the most skilled. “Oh my God, so much pressure,” she says to which I respond that the pressure is really on me...I have to give her a good number. We both manage to deliver. She tells us that she just graduated and is now going to be “wearing the dark blue” as a bona fide certified nurse. We both congratulate her and thank her for all of her service in healthcare.
1:45 Discharged.
3:09 Home. Happy. Showered. Disinfected.
Wow.
Prepare, don't panic.
-Allison
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