When I'm wheeled into my new room in a different wing of the hospital I'm caught off guard by how big it is and that there is another bed across from mine. I can't fathom having a roommate right now. My mom assures me the caseworker said I could have a private room. She pulls the curtain closed that hangs from a ceiling track and makes the room a little more private. Next to my bed is an uncomfortable looking chair plus my barrage of machines that are constantly beeping. Tubes and cords run from all of them. A bathroom is right outside the curtain.
Soon I realize I have a sensation I haven't felt for awhile. I deduce I must've had a catheter up to this point. It's a strenuous process to lift my hips and have my mom slide a bed pan under me. It's as if my bladder forgot how to function. My mom explains I have lost a ton of muscle mass and it dawns on me that I won't be moving from this bed for quite sometime. Questions start forming in my mind but I still have to pick the most important ones to ask because I know I can't write that fast. I touch all my cords and tubes, there is one coming from nose, my neck, and one from either side of me. What are these? My mom, a nurse for over 35 years, explains the feeding tube, the tracheotomy, and the chest tubes.
A case worker comes in to meet me and offer her assistance. A nurse with a nice smile brings me water and a menu that I won't be needing for sometime. The director of the wing comes to answer any questions. The infectious disease doctor comes and listens to my lungs and talks about things I feel like I should know about. We will probably do a CT scan soon he informs me. The nutritionist comes in to talk about my feeding tube, the respiratory therapist (RT) to examine my trach. A nurses aid comes to check my vitals.
In between this constant flow of people my mom continues to try and communicate with me answering questions that I write down as they come to me. Why is my left eye sewn shut? What's wrong with my finger and toes? Will they heal? How long have I been here? How serious is this? How much longer do I have to stay? She looks at me lovingly and patiently answers each question, probably more than once.
Day gives way to evening and John is on his way to spend the night with me. The bed I lay in has an uncomfortable hump in the middle of it. My head has to be elevated as much as possible to keep the fluid in my lungs draining in the right direction. I long for sleep, the transport and the questions and visitors have exhausted my fragile body. As I try to rest, I slip down the 45 degree angle I'm laying on making my neck where my bottom should be and my feet hang off the end of the bed. Wriggling upwards is next to impossible, I don't have the strength and my cords and tubes catch on the bed rails. I bend my knees and close my eyes in a crunched position.
Mom notices my predicament and leaves to find my caseworker. After some persuasion, the caseworker lets me switch into the bed across the room even though it is for bariatric patients. I still slip down but at least the hump is gone. Once I've had my medicine I can finally sleep for the night.
The night nurse comes and unplugs the feeding tube that is in my nose. She holds up an over sized syringe, connects it to the tube and pours in a liquid concoction of drugs. I make a mental note to ask what all medications are now being siphoned down my throat. I can feel the liquid enter my nose and move all the way down my esophagus. A wave of nausea comes over me and I begin to sputter and cough.
"Almost done." The nurse tells me. She reconnects my feeding tube to the hanging bag filled with thick white liquid and leaves me in a fit of coughing and gagging. I motion to the plastic basin on my tray. I try desperately to shake the nausea. "Deep breaths, deep breaths," I tell myself between hacking coughs.
"You may need suction. I'm calling the RT," Mom says and picks up the phone while she looks at the number on the whiteboard listing all my caregivers. "She's coming Jenn, try to stay calm."
A stocky woman barrels into my room and is at my bedside stretching gloves over her small hands in an instant. She opens a plastic kit with various tubes and looks at me with weathered gray eyes, "You're gonna be alright sweetheart." My eyes shift back and forth nervously as I begin to hyperventilate which complicates the coughing.
"You have to stay calm and take deeper breaths," she orders. "I'm trying, but I'm choking." I wish I could tell her. She works quick and inserts a long suction tube into the open trach in my neck. I feel like my airway has been cut off as the tube moves further in gagging me even more. I start making frantic hand motions. "Please take it out! Take it out!" I yell in my my mind.
"Calm down! You are getting yourself too worked up!" commands the RT as if this is routine happenstance. I realize to her it is.
Every part of my body feels tight and shaky despite the prescriptions that are meant to keep me subdued. Before I'm aware of it, they are coming back up through my trach and my mouth. Luckily I still have the basin to catch most of it. The tears start to gather in the corner of my eyes. I think I catch a glimpse of pity on the RT's face as she stands there with her suction tube waiting to see if the coughing has subsided. Why is this happening to me? I just want rest but instead I feel trapped in this never ending nightmare; surreal and dark, only I don't have the hope of waking and finding myself safely under the covers in my own bed.
I lay there depleted and helpless as the RT works to clean around my trach and change the collar that secures it in place. My mom helps remove my gown. I can barely lift my arms as she untangles my cords and slips a fresh one up over me. The RT talks casually to my mom and I'm not sure I like her despite her helping to end my coughing fit. She is saying something about her own daughter. I let my eyelids slip down and sleep overtakes me.
The next morning I'm awakened by a doctor who checks all my breathing apparatuses and listens to my lungs. John is awake in the chair and we both try to take in what he says as we wipe sleep out of our eyes. We both slept fitfully due to aids coming in to check my vitals and the frequent need for a bed pan caused by the constant flow of my feeding tube. The doctor is saying something now about an elevated white blood count and a CT scan. It's possible I may need another chest tube. The thought of this is absolutely terrifying. The pain from the ones that were removed in ICU still resides right under stitches in my sides.
Soon a nurse comes in with the morning's dose of medicine. She grinds the pills and begins the siphoning process again. I'm already beginning to cough and the nausea bears down its weight once more. The nurse suggests we should try some zofran, an anti-nausea medicine. I think about how zofran never helped in the past during pregnancy and I assume it won't help now. I may as well try anyways. I inwardly sigh as she injects it directly into my IV.
The RT enters as the nurse leaves, a different one than last night. He is a jovial man who makes jokes while looming over my trach. He cleans all around it and changes the collar. He wants to suction when he sees my cough is worsening. I shake my head in panic.
"I'll go easy on you, I've been told to stay right on the top," he pats my arm and pulls out a kit of tubes. I look around for the basin to ready myself for a repeat of the evening before. This time is not as bad. I don't vomit but the coughing continues. He tries a couple more times to remove the buildup but is unsuccessful. I want him to stop so I give him a thumbs up when he asks if it feels clear. I don't know what "clear" is supposed to feel like when I have tubes running down the inside of my esophagus. He says he will come back to check on me before his shift is over.
I'm so thirsty. "Can I have ice chips?" I write in my little notepad and show it to John. He leaves to find the nurse and returns with a small cup."Not too many" the nurse had warned him. The ice is refreshing and is the first bit of relief I have felt since arriving here.
Soon an aid comes in followed by the wound care team. A doctor and two nurses take pictures of my various wounds and my fingers. On my left hand the skin on all my fingertips is black and hard. The middle fingertip on my right hand was affected as well. The doctor explains necrosis and that surgery will be necessary. This is upsetting but at least I was somewhat prepared. My mom and John have been explaining to me that all my fingers and toes were affected from the amount of blood pressure medicine that was needed in ICU. This particular medicine pulls all the blood toward vital organs resulting in the flow being restricted in the extremities. I was on the maximum dosage of this for an extended period of time. This concerns me, maybe more than it should. The doctors view it as a small price to pay. While they are right, it doesn't make me feel any better about it. I just have to let it fade into the background for now like the incessant beeping and moaning from patients in the other rooms. The emotional pain is too much to absorb coupled with the pain I feel in my body. I have to just let it fade away.
These are my days, rounds of doctors, nurses, and visitors. Blurs of struggling through nausea and coughing fits that can last for hours and multiple suctioning attempts. Then there are X-rays, CT scans, injections, bed pans, and waiting for drugs. Lots of waiting. I begin to get desperate when the nurses are late. The last round is wearing off and all I want is the numbness and warmth I feel when I'm beginning to drift into sleep. I want it so much it scares me. I've been witness to drug addiction all my life and how easily it overtakes someone. I put that thought out of my head and tell myself it's just for now, just to get through.
A week passes, maybe more. When I'm awake time slows to a crawl, the minutes feel more like hours. My sleep is broken into long naps even at night time. One night, I jolt awake gasping for air the way one might awaken from a nightmare. My air way feels tight and panic creeps up over me like a shadow in the dimly lit room. Images of coughing up blood flash through my brain. I find my remote that has my call light button on it and bang it on the bed railing. John is instantly awake and on his feet trying to assess what's going on. It's seems as though I'm watching the scene unfold from somewhere else in the room as the panic inside me surges and my limbs start flailing uncontrollably. All I can think is, "I can't breathe, I can't breathe." I mouth the phrase over and over. John quickly calls for an RT when his attempts to soothe me fall flat.
After what seems like several minutes, the RT from the first day appears in my room. Tonight her demeanor is decidely different. She leans over my bed and places her hands on my wrists. Her face close to mine, she speaks to me in a soft but confident voice. She says my name and looks right into my eyes. Her presence helps reality to surface. I try to concentrate on her words. Breathing deep through my nose is helping but I still feel shaken up as I try to contain the terror I feel. Now I'm concerned I will have to be suctioned and I shake my head vigorously when it is offered. The RT calls for a nurse and asks her to administer something for my nerves.
"She just got a little worked up," she says as she pats my arm. John is reassuring me and settling back into his chair. The drugs do their work quickly and soon my anxiety is subsiding. I'm slipping down a slope and will drop off into sleep any second. I take note of the RT's name tag through weighty eyelids. I abandon my first impression of her. She checks my machines and smiles wistfully at me, "You remind me of my daughter." I ponder her sentiment but sleep overtakes me.
***
"Keep looking up, try to hold your shoulders back," the therapist encourages. Her partner, a little older than she is, stands at the foot of the bed. They make side comments to each other as if I'm not there, but they are friendly enough.
"Do you want to try getting in the chair?" I look over to the green standard hospital recliner and my head begins to spin. I point behind me to my place in bed without looking up. The room is reeling around me and without her holding me up I would topple head first onto to the cold white tile. She helps me back into my propped position in bed.
"We have to try to get you out of bed so we can get you walking again," she says arranging my covers. "We will try again tomorrow." Before leaving, they show me a few leg exercises I can do while laying down. I do them even though I don't want to. I want them to leave and stop looking at me with that expression of pity or frustration or whatever it is. I can't tell and I don't care. I don't see how this matters. I can't talk, drink, or barely breathe without complication. My body feels heavy and my muscles undependable, how am I going to walk? I'm so relieved when they are gone and I go straight to sleep.
When it is time for therapy the next day I don't even bother trying to sit on the edge of the bed. I scrawl in my notepad that I'm too tired and nauseous. The young therapists looks to her partner, then they both look at me with that same expression from yesterday. This time, it registers to me what it is because it is the same look that John wears on his face when he says I have to just try a little. It's the same look on my mom's face as she sits beside me and wrings her hands. Its a look of fear. Fear that I won't ever get up, that I will just stay in this bed and wither away.
They tell me I've been a fighter, that I can't give up now because I've come too far. This doesn't feel true to me, I can't process what I've been through up to this point. All I know is that I need a little time. I'll try again tomorrow. I'm not sure how many tomorrows passed.
They are concerned because my weight is dropping. It's just a pound or two, but when the bed scale registers in the lower nineties every pound counts. The ever present queasiness worsens when my morning opiate dose is decreased, then stopped all together. I didn't think it was possible but I feel worse and I know I must be going through withdraws. One night I practically sleep on the bed pan, waking John every hour or so to remove and clean it. I wonder if the feeding tube wasn't contributing to this. I had always had aversions to dairy and now it was being pumped into my system around the clock. The nutritionist agreed and suggests we try soy.
My lifelong best friend is coming to visit tomorrow. I don't know why I'm surprised when I'm told she's flown in from Houston and she's been working with my doctors on my plan of care since I've been in ICU. We grew up together on the same street, our families tied through our mothers' friendship in nursing school years ago. Now she is a doctor completing her residency in Texas. Everyone needs a friend like Natalie. No matter the distance or time we spend apart we never miss a beat. She is family to me. Her eyes fill with tears when she sees me and she comes to gently hug me and holds me a few seconds longer than she normally would.
It's ok that I can't talk, she can read my lips and I use my notepad when I need to. We "talk" about everything and nothing at the same time. I'm just happy and at ease that she is here. Not only do I trust her medical judgment, I trust that she can handle me in this state. Her mom is here with her and from years of working with the elderly she is an expert lip reader. John is the only other person who I don't need a pen and paper to communicate with. My mom and stepdad sit on the side of the room and chat about normal things with her. My sister comes shortly after. She has just been to visit my kids who are staying with my dad and says they will be able to come tomorrow if I'm up for it. The familiarity of having them all around me feels like a safe nest but there is also a sadness that hangs in the room.
It's crushing to see how much pain and worry I've caused in my loved ones, but at the same time it is gift that they give because I know how much I mean to them. I'm not naive enough to think that everyone has the luxury of great support systems. I know that our bond has been forged in the fire of trials just like the one I'm in the midst of right now. When I look at them, I see the history that weaves together making the entanglement of our own stories, which I suppose really aren't just ours alone.
Evening is nearing now and Natalie and Jolissa both face me while I sit in the green recliner. This is maybe the second or third time the PTs have coaxed me off the edge of the bed. I refuse to do it with anyone but John's help. Once I take the three shaky steps and precariously turn my body so that I can sit down I want stay as long as possible. I'm growing weary of the bed now that my periods of wakefulness are longer and longer. I don't know how it starts, but all the sudden in the presence of my safe people, the tears begin to flow in a way they haven't since I've been here. These are not tears induced by pain but of the anguish that has settled in my heart.
"I just want to go home," I mouth through my hot tears, thinking there's no possible way for me to say what I really mean and the depth of how much it all hurts. So I just repeat, "I want to go home."
The way my sisters look at me tells me they understand and their hearts are grieved. They both reach out to take my hand and offer their own tears up on the altar of this quiet moment. We sit like this for several moments, allowing space for each other and for the tears to stop on their on accord.
My older sister, whose own life experience could fill a book, says the most simple yet profound thing. "It's so easy to get bogged down in the pain and the physical issues and forget to feed our minds the truth." She was right. I needed to hear this but I needed to hear it from her. Knowing my sister and walking through some dark times with her in the past, told me this was not a cliche "think happy thoughts" line. She was speaking from the well of truth in her own soul.
We act on what we believe whether or not we are conscious of it. I hadn't been taking the time to take care of my thought life. I spent a lot of time trying to resist feeling sorry for myself. My prayers consisted of, "Why is this happening, God?" and "Where are You in all this?" I listened to all the diagnostic and medical speak around me. I played it over and over in my mind. I observed the looks of fear on the faces all around me and digested them. I knew I had to put forth a little mental energy to do better. I made a silent vow then and there to start. I didn't know how I was going to do it so I just prayed for the truth to pour in.
Continue to next post...
No comments:
Post a Comment