Don't Hold Back

The last few posts I wrote months ago really took it out of me. I wish I could say I have been working on some cool new thing but no, I was taking a breather. I needed some type of transition, and though its hard to come by, silence. This summer has been filled with good books galore and a sabbatical from writing my own words.  I needed time to store up creativity in the quiet mornings while the kids sleep off their summer wanderings. No conjuring of experiences to write about (the best ones come on their own anyways) or narrating in my head (please tell me I'm not alone here, fellow writers). I needed time to just be...

To let all the days flow through me like sand sprinkling through an hourglass. Not trying to record or post on a feed or timeline, just letting each moment slip away like it was intended to.

To practice gratefulness for right now. Whether right now is seemingly important or not. 

To lean into fears and doubts, opening the box they've been kept in so I can see what they have to say. They teach us alot when we actually listen.

To let my actual body just exist on it's own with out owing anything to appearance. To just wear and enjoy those unforgiving summer clothes and bathing suits that I'm comfortable in. No worrying about tans, or scars, or rolls or any of it. (I did try self tanner, it was short lived.) 

Saying yes to fresh air and bike rides, swimming and roller coasters. Things I would usually just try to supervise or coordinate for the kids while I do grown up things.  

One of my favorite things has been to put little Joel in my lap, hug him tight with one arm, and swing as high as we can on the squeaky playground swings. His reckless excitement over such a small thing hits me somewhere deep. It lets me know that although there is solemn pain and injustice in the very air we breathe, there is also joy and healing that abides. 

I found a video on an old iphone from Jayda's birthday. Without even watching it, I remember the exact day. It was an unusually warm December day and we had taken a long walk and ended up at the swings on the riverbank. I was just on the tail end of that first year stage after you birth a child where you don't quite feel like yourself. Nothing you own fits the way it should, your body is out of whack and you just have to sit in your mess and uncomfortable-ness until it passes or at least you find your new normal. I remember that I had ventured out spontaneously and that was a good sign that I was regaining balance. 

I hesitantly push play to relive this memory and watch us swing back and forth, little Joel experiencing the feeling of swinging, the climb up, the falling again and again, for the first time 

The wind blowing through unkempt hair, the much needed laughs;
Swaying like a pendulum, slow motion in the winter sun. 

It was one of those sweet moments where you feel grounded and present, connected to the people you are with. I cherish that memory although it is tinged with the sadness of knowing that in a couple short months our world would be rocked. It's hard to watch without wishing that somehow how I could go back. The "what if's" start to form...but no, I wont let those thoughts rob the innocence that was in that memory.

Instead I have to let it remind me not to hold back. To not sit on the sidelines, to go for it when opportunities big or little present themselves.  To even be on the look out for those moments and take initiative to create space in my days that would allow for such a moment. It could be investing in a new friendship, an experience you wouldn't normally say yes to, a risk that you can't just can't fathom taking. 

Granted we can't say 'yes' to everything and everyone. 'No' can just be just as healing and rewarding as its counterpart. This is where wisdom and self awareness come into play. Find out what gives you life and do those things, prioritize them, even if those things scare you a little bit. Make it a practice to be holistically ready to take the risk of living with your whole heart, facing fears and awkwardness and pain. Own them.

What is this for you?

Take a few minutes to think of a time you felt refreshed, or grounded, or just...alive. What were you doing? 

Let's do more of that. Don't hold back.

Happy Sunday, 

Jenna

Rehab

Start from the beginning : 
CVICU
LTAC
LTAC II


What I love about rehab is that I am free of cords and tubes. I learn to cover my open stoma with my good hand in such a way that I can get my voice out. It gets easier with practice. I still cough and the residue in my lungs comes up frequently. I have these coughing fits that seem to come at about the same time every day. The fits can last anywhere from a few minutes to over an hour. The doctors tell me this is normal for the condition of my lungs and could last at least 6 months.  

The first weekend I'm admitted, John brings Italian food into the cafeteria and wheels me down to eat with my kids and some other family members. They've all come to celebrate Mother's Day. I think about my own mother and have thought about her often during this process. She has taken off months of work and stayed far from her home in order to be by my side. She comes in early every morning to be with me now that John has to go back to work. She has shown so much patience and endurance, I worry about her taking care of herself. Before we meet our family in the cafeteria John takes me to the gift shop and I buy my mom a candle. There's really no purchase that can express how much I appreciate her steady companionship, so this will have to do for now. I start mentally composing a letter to her, knowing that it would probably be worth far more than anything else.

Being with my own children is especially meaningful at this point in my journey.  This is the first meal we have shared since I've been sick. I savor each of their cherub faces at dinner. Joel happily chattering, covered in spaghetti. Jaren bouncing around in his seat and then buzzing around the table. Jayda cracking jokes with her gorgeous grown up smile. They all have almond shaped eyes and look reminiscent of each other but different at the same time. I can't imagine loving them much more. Even with my heart overflowing, after 20 minutes of sitting in the wheelchair I need to go lay back down. Sitting up is still exhausting. My bones hurt where they touch the chair, not used to the weight they bear out of the relative comfort of my hospital bed. 

On Monday at 5 AM my first day begins with the lab knocking at my door wanting to draw blood. For some reason I thought my sleep would be uninterrupted here. After I'm awake I have to start the harrying process of sitting up in bed, standing with my walker and rotating to my bedside toilet. "No bed pans in rehab" I had been told. John has to help me do this, the both of us operating in a half awake, half asleep state.

They bring breakfast a couple hours later after I had finally just drifted back to sleep. I eat pancakes and watch birds fly back and forth outside. Way in the distance between rows of city blocks is a prominent historical church that I instantly recognize with its circular stain glass windows and turrets jutting up towards the sky. The multi site church our family attends across town has taken on the project of restoring it so that it can serve as a branch for college students to attend. They had recently launched this campaign right before I got sick. Everything that has happened since then is still so much to process. Yet as I take in this city that has become our home I sense a connection, an unjustified hope, I can't quite explain. 

An occupational therapist comes interrupting my thoughts and gets me out of bed. She wheels me to the shower room. I so anticipate having the warm water run over my body, a simple pleasure I haven't enjoyed in two long months. I have to wear rubber gloves to protect my hands. I move at a snail like pace as the therapist helps me move to a seat in the shower stall. She stands outside squirting shampoo and body wash into my gloved hand. I am shivering even through the spray of warm water and my teeth chatter as I try to wash myself. I accidentally splash water into my trach and immediately a drowning sensation pushes down my throat. I stand quicker than I know I'm able to and shut the faucet off. The therapist throws back the curtain wanting me to sit back down.  I'm covered in soap still, shaking and coughing erratically now. She gently helps me rinse, dry off and dress. I slowly hold out one humbling limb at a time for her as she slips clothes onto my clammy, emaciated body. I stub my toe on the rough floor of the shower stall and a puddle of dark red quickly forms beneath my foot. I knit my eyebrows in concern and look to the therapist. She quickly grabs some gauze from a nearby supply cabinet and applies pressure. "It's the blood thinners," she reassures me. She looks up at me apologetically. Next shower, she says, she will cover my neck and warm the bathroom before I come. I don't stop shaking until I'm nestled back in bed under layers of blankets.

Not long after my shower I meet my the therapist who will be working with me.  She wheels me most of the way to the gym, but wants to see how far I can get using a walker. My mom follows behind with a wheelchair. Once we are there, I sit on a stationary bike and pedal for 6 or 7 minutes at a slow, even pace. I look around the gym and see mostly older people paired with their therapists. There is a wooden model of a car to practice getting in and out of, a kitchen equipped with appliances and a small table.  Some leg weights sit in the corner and balance bars with a conveyor like walkway occupy the middle of the room.  There is also a long row of padded benches lining the wall where one man sits and argues with his therapist. His frail frame is bent over a walker, his expression irritated and evasive. He says he is tired and doesn’t want to try walking. I recognize him as the man in the room next to mine, the one with the blaring alarm sounding his attempt to get up out of bed at all hours without assistance. This is usually followed by the loud voices of the nurses reminding him that he is in the hospital and to push his call light if he needs something.

 “No, not today,” he keeps insisting batting away the therapist who tries to get him to stand. “Take me back to my room. I want to lay down.”

Fear rouses inside as I recall being in this reluctant frame of mind not long ago. I hope this isn't a foreshadowing of what is to come for me as therapy becomes more intense. I know that my story and this man's are lifetimes apart, yet here we are in the same rehab facility, a little blip on our timelines coinciding. Suddenly the brevity of life sneaks up on me sending a shudder down my spine like its done so many times since being here. I have to intentionally turn my attention to stare out the window, the commonality of human suffering and ultimately death, too much to ponder right now. There is the familiar blanket of Midwestern gray that lays over the hospital parking lot, the stark trees reaching upward. It isn’t much to long for, but still I wonder when I will get to breathe fresh air for the first time since being sick. I try to let that motivate each second that ticks by on the bike.

My therapist is optimistic that I’ll be out there in no time. She is sweet and tough rolled into one. I can tell from our first stroll down the hallway that she is not going to let me slack off. Still, throughout our time together she allows plenty of breaks for me to catch my breath and cough up mucus through my stoma. Every so often she stops to make sure I’m ok. She makes easy conversation with my mom and I. We learn that besides working as a PT she is also a dancer and has the athletic build to show for it. I admire that about her. I’ve never really been athletic and this is probably the closest to working out consistently I have ever been. Despite the exhausting recuperation involved, I begin to look forward to sessions as I surprisingly learn to do more than I thought I could. When it is my main therapist’s day off I miss her and the quiet confidence she instills in me. She doesn’t look at me with pity or doubt. I can tell she likes working with me and that she believes I can do these daunting physical tasks.  She tells me to do something and I try my hardest to do it. 

Soon I am walking slowly without the assistance of the walker, but still leaning into my therapist. On the next day, I take a few steps without her, then a few feet, then ten feet. Besides controlling my labored breathing, the hardest thing is balancing and keeping my head up. I feel top heavy and I just want to watch my feet. It feels like I am trying walk on a fun house floor that tilts back and forth with each step. The skills can be unlocked, I tell myself. My body was made to do this, it just needs a little practice. 

With each day that goes by I build a little more strength and a little more confidence. I can scoot my walker further and further and finally all the way to the gym. I learn how to carefully get in and out of the model car. I stand between two handrails bracing myself and practice slow leg lifts and squats. I learn how to maneuver myself around the small kitchen and hold the walker while I open top and bottom cabinets. One day, I make a grilled cheese sandwich, strenuously gathering the cheese, bread, frying pan, and spatula. Afterwards, I'm breathing too hard to eat the sandwich. With each session, I exhaust what little energy I have and go back to my room to nap so that I can be ready for the next time. I also relish the satisfaction of the progress I've made knowing it brings me one step closer to the goal of going home. 

My proudest moment is when I walk figure eights around cones that have been set up in a straight line. I wobble a little bit on each turn but my therapist is close by and assures me she will not let me fall. I trust her strength more than my own.

It is nearing the end of my stay here and the talk of discharge is both thrilling and daunting at once. I have wanted to be at home for so long but I worry about the details. I worry about getting around my house alone and getting back forth to appointments. They are making arrangements for a home visit. I grimace thinking about all the stairs in our skinny row house and how far the bathroom is from my bedroom. How will I make myself food let alone take care of my kids eventually? I'm so tired of being apart from them. I have to constantly remind myself with every other thought that everything can't happen at once. I have to focus on strengthening the abilities I do have instead of mulling over things I can't do yet.

An airy spring day seems to break through the clouds right when I need it to. My therapist seems almost as excited as I am to step out onto the sunny sidewalk of the hospital's entrance. There is a ramp lined with blooming red tulips that we practice moving slowly up and down. The trees are budding with new green against a cloudless sky. I never want to stop breathing this air that is carried on the slightest breeze against my feeble body. My mom is with us and stops to talk to a doctor that is coming into work. He remembers me from early on and is smiling ear to ear because of my progress. We stop for a picture to post on my update page and to remember this milestone by. Soon I will go home and will have overcome yet another milestone.

My things are packed and I'm dressed, ready for my mom to drive me home. A few days earlier we completed a home visit and the therapists gave us a list of things to prepare for my return. I moved through my house with a walker and practiced walking up and down all the stairs. Now as I anticipate going back I'm faced with mixed feelings. It's a little scary to think that I won't be constantly monitored but yet exciting to think I can sleep in my own bed. I can go outside and be in the healing sunshine everyday. I can see my kids whenever I want to. Of course, it will take time to get my life back completely. 

As my mom and I pull out of the hospital parking lot we stop for a picture. We both look tired and worn, but happy. It feels like this chapter of the story is coming to a close. In the ICU, the staff kept comparing my situation to a roller coaster, they told my family to not get on the ride, to let them handle the ups and downs. Now it feels like the ride has slowed way down and a different picture fills my mind.  Like we are standing on the peak of a mountain, exhausted but elated, and all the while knowing we still have to make the journey back down.

I know that on the completion of every small goal, new challenges loom on the horizon. I am learning day by day to take these challenges as they come to me. I am learning to celebrate in the midst of not being where I want to be yet, one step, one breath at a time.

*** 

Mothers often commit to memory their birth stories wanting to remember all the gritty details. Not only the victory of new life, holding that freshly bathed perfect new human, but also the pain and strife and blood that had to be poured forth. It's symbolic of so much that we can barely put words to the miracle of life, yet somehow we all understand. And that understanding helps to ease the pain. Our pain eases when it is shared, we weren't meant to carry it alone. Alone, our knees buckle under the weight. With other shoulders to bear the burden, it becomes manageable. The pain belongs to all of us. 

By inviting you into this chapter of my story it in it's raw form, my hope is that it gives you a hunger for more.  A desire to see and embrace the hurt of others, to step into their shoes. I hope it gives you courage to allow someone to step into your own story. Then one story at a time, we can become more whole and compassionate people.

Thank you for sharing in this journey with me,

Jenna

LTAC:II

to read from the beginning start here: 
CVICU 
LTAC (part 1)

The morning after that conversation with my sister and best friend my usual waking thoughts of dread and fear gather over me like a cloud. Only this time, I intentionally push them aside and open a Bible app on my phone. I have no idea what to read so I just read a few Psalms. The prose that usually feels a bit dramatic does not seem a stretch right now. After I read a few, I go to Facebook and actually interact with some of the encouraging comments the people on my update page have posted. Usually, I just stare in disbelief not knowing what to say. 

The sunlight streaming through the shaded window catches my eye and for a minute I daydream about going outside and wonder how cold it is. I think I'll ask someone to open the shade when they come in. I look around at the rest of my room and instead of seeing the machines, I study the paintings my friend Rachael hung and the banner my kids home school co-op made. I admire the pictures that have been brought over from ICU. Pictures of life as I once knew it, normal and smiling, where the biggest problem is wondering what to cook for dinner. I decide today will be different and that I will get back that life one step at a time. 

Looking at the clock, I count the hours until physical therapy. After the coughing fit and nausea have died down, I start my leg exercises. It occurs to me that these little things matter right now and that I won't be able to just jump out bed one day. It is going to take many tiny deliberate actions all focused in the same direction. 

When therapy comes I am determined to stand. I want John there. I trust his strength and looking into eyes infuses me with confidence. Once I'm in position on the edge of the bed and my feet on the floor, the therapist places a walker in front me. My mom stands off to the side with the other therapist and reminds me to control my breathing. It feels like a heavy weight is pushing in on my lungs like I've just sprinted a mile. All my air seems to escape out my trach so I can't fill what little lung capacity I have left. My feet hurt on the hard floor and I feel the bones press down as I grip the walker and summon my leg muscles to stand. I'm shaking and breathing hard, but I am standing. The therapist wants to see how long I can make it. It is about 15 seconds before I need to relieve my legs. After a rest we are going to try again. 30 seconds this time is my challenge. I am able to do it but am tiring quickly. I sit down and immediately want to lie back. The work of breathing and balancing is harder than I thought but I am also pleasantly surprised by my effort. I feel like I jumped a mental hurdle and that if I practiced enough I could get the hang of it. I am already thinking about tomorrow, the therapist wants me to try to stand for a minute. She encourages me to do leg exercises and to try sitting in the chair for a bit later today.  She does not look at me with pity today and there is a slight shift of assertiveness in her tone. Perhaps she sees my meager offering of willingness and is hopeful that I'm turning a corner. I am hopeful too.

Day by day, I overcome seemingly little challenges in therapy. I go from standing 1 minute to standing for 5 minutes; from taking a few steps in my room to slowly shuffling down the hallway. The physical aspect of it is terrifying. My oxygen drops with each step I take. I sweat and grit my teeth concentrating on each step. The therapists constantly have to remind me to keep my head up as I walk but it feels so foreign. I put one foot directly in front of the other, trying to calculate each step, like I am walking a tightrope. When the therapist points this out, I have to watch how other people walk to understand. I wonder if this is what toddlers feel like when they are attempting their first steps.  

John shows me a video of my progress but instead of watching my steps I'm cringing at the way my back looks through my parted hospital gown. Every bone in  my spine seems to be visibly protruding through my thin flesh. I am taken aback as if suddenly realizing how much weight I've lost. John tells me about my favorite RT, the one who steadied my anxiety attack that frightening night. She had lost her daughter to cancer in recent years. Even though maybe she wasn't supposed to, she told John how she watched her daughter dwindle to nothing. How she could not and would not eat despite the families pleas. Her daughter was around my age. Another piece of the puzzle slides into place. Suddenly, I can't wait to see the speech therapist again. 

The RT's and the speech therapist had been working on getting me to wear a speech valve on my trach. The first few times were discouraging. I would try to make sounds but nothing would come out. Until now, I haven't cared to keep trying. Seeing my undernourished frame had given me new motivation though. If I could learn to use that valve, then I could take a swallow test which would allow me to eat something other than ice cubes. 

I have John screw the valve over my trach and try the vocal exercises the therapist showed me. Nothing comes out. I do this in my spare time for the next couple days even though my attempts are futile. Out of the blue when I'm practicing by myself, I hear it, my voice barely above a whisper. I'm so excited when John comes in. 

"Can you hear it?" I ask him in my hint of a voice. A smile fills his face as he nods, "I knew you could do it."

By the next day, I've got it down. My speech therapist tries not to get emotional when she hears me speak, but I see the tears well in her eyes as she writes on her clipboard. She says she will set up a swallow test for the following day. I have to drink an orange concoction with barium in it so they can x-ray my esophagus in action. I surprisingly pass the test without any complications and I'm cleared to eat and drink. 

Not very long after I'm wheeled back into my room, the speech therapist brings in a tray of food with a plastic lid. She excitedly removes the cover to reveal a plate of steaming hot hash browns and scrambled eggs. A small cup of apple juice sits off to the side. The meal looks about as appetizing as hospital food ever does but I haven't eaten in so long I'm still anxious for a bite. I try a potato first and chew it carefully hoping I wont choke or cough. There is overwhelming metallic taste with a hint of potato flavor. I chase it with apple juice which is sickeningly sweet. I can only manage a few nibbles before the familiar nausea rears it head. 

"It may take awhile for your taste buds to get back to normal," the therapist half smiles and covers the food back up. "You can try again later."   

Over the next several days, I discover after trying out an array of foods that everything tastes horrible. When I longed for a drink I craved a sugary cherry slushie, but now it tastes so sweet I spit it out like rancid milk. My mom and John beg me to eat constantly and bring me all sorts of food from the food court and the trendy restaurants in the surrounding neighborhood. John is working with a nutritionist and prepares smoothies and bone broth soups. He brings in bags from Whole Foods every other day to see if there is anything at all that looks appealing to me. Usually, I only end up taking a few bites of anything that even looks remotely edible. Besides the taste factor, my appetite is nonexistent thanks to the feeding tube that is pumping me full day and night. One night, exhausted from therapy, my mom feeds me small bites of penne pasta as I nod off to sleep. My goal for the night was to eat five bites and I barely achieve it. I know everyone is frustrated with me and doesn't understand but I just have no desire to eat at all. Again, I wonder if this is how a toddler must feel.  

Hoping to please my caretakers and fearing further weight loss, I mostly nibble salty turkey jerky, pretzels and clif bars. Plump strawberries and grapes from the cafeteria are the next thing I learn to stomach. Despite the taste, at one meal I am finally able to eat one chicken strip. I become better at forcing myself to eat as my stomach slowly expands. I don't come close to eating a full plate until it is nearing the end of my stay in LTAC.  


I am terrified to leave here. One would think, I would want nothing more. I doubt my ability to withstand 3 hours of exercise each day. Right now, a tortoise paced walk around the LTAC unit leaves me breathless and debilitated. I won't have that special RT to carry the oxygen tank during therapy or my favorite nurse smiling at me from behind the desk. The staff in this unit have become familiar and they cheer on my timid progress. Regardless, my therapists think I am ready and things start happening quickly. A new doctor removes my IV and the chest tube that was piercing through my upper left lung. When the nurse pulls the feeding tube out of my nose, the sensation is beyond relief. I can't stop touching my face. I smile as I feel a tiny bit of my old self shaking loose.

The day before my discharge, the jolly RT I've come to appreciate happily dislodges the trach from my neck. He covers it with a gauze pad, instructs me on cleaning it and assures me the stoma will close in a week or so. I open my mouth to thank him but no sound comes out. I don't know what I was expecting, but I was shocked and disappointed that I am back to having no voice.

"Try covering the hole with your hand," he smiles as he cleans and gathers his supplies. "Your stoma should close up in about a week, maybe two. There will be some scarring there but once you get out in the sun and get a little tan, you will barely notice it."

I wasn't prepared to deal with the loss of my voice, let alone the gaping half dollar sized hole where my trach used to be. I try to be optimistic that I will heal quickly. I try to view each new challenge as just another obstacle to overcome on my way back to normal health. Still, being able to speak without hindrance had been so freeing. It made me feel as though I was participating in my recovery and it wasn't just something that was being done to me. The trepidation of moving to formal physical therapy is heightened by my return to silence. I am discouraged, to say the least. The jumbled emotions well up and spill down my cheeks in a steady flow. 

It isn't five minutes later that there is a knock on the door. My mom comes in followed by a woman with a lovely smile. She comes straight to my bedside and tells me how happy she is to finally meet me. Behind her is a man who also smiles kindly and they sit together beside my bed. I immediately know who this couple is even though I've never laid eyes on them. My family met Elyssa in the waiting room of the CVICU. She was there doing the same thing they were, waiting to hear news of progress or decline of her husband Joe, who is now sitting right beside us. He looks healthy and ordinary like if you passed him on the street you would never know he was struggling to live just a few short weeks ago.


Although I'm certain I still have trails where the tears streamed down my face from just a moment earlier, the mere presence of this couple  uplifts me. I just keep looking at Joe, sitting there breathing normally his trach scar barely visible. He tells me how he went back to work this week and him and his wife take long walks together in the evenings. This sounds so delightfully mundane, just so perfectly ordinary. We talk about my impending transfer to therapy and the worries that surround it. Joe keeps saying,"If I can do it so can you." 

When they leave, I'm so struck by the timing of their visit that my soul is quieted like a baby laid to rest. This feeling gives me the strength I need for tomorrow's discharge and move to formal rehabilitation. 


Continue to final post...

LTAC

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.

***

The next morning, I can barely lean forward into bed when the physical therapists come by. They want me to practice sitting up on the edge of the bed. This is the beginning of the long slow process of being mobile and independent again. It all seems so far away and irrelevant right now. One of the therapists is a young girl, maybe younger than me, dressed in scrubs and athletic shoes. She stands right beside my bed and holds my wrists, steadying me, as I slowly and awkwardly scoot toward the side and swing my legs over. My head feels like it weighs more than it should and I have to concentrate to keep it up. My equilibrium is skewed and the ground seems to pull at 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...

CVICU

I seem to be dreaming only I don't remember falling asleep. I slip in and out of nothingness.  There is a black inky haze around me, almost like I'm in a bubble. My subconscious recognizes partial reality, like I know I'm in a hospital bed and there are people around me I know and love. My husband, John is here and his presence sets me at ease. There are others I have never seen. Some of these people strike such fear in me I resist them and fight them with all I have. They try to keep me still but I want to escape. They seem upset with me but I don't know why. Some of them talk to me, others talk about me, over me. They are all faceless but their energy, their presence I can sense when I dip into a wakeful state. 

When the people around me panic or seem condescending I react like a defiant child thrashing and refusing to listen. Its not that I'm trying to be difficult, I'm just so confused. There are people on every side of me holding me down. They are all talking at once saying my name, trying to persuade me to be calm. No, no, no I can't be calm. You are hurting me, forcing me to do things I'm unsure of. I struggle and try to push them off. I grab an arm that is pushing exceptionally hard and squeeze so forcefully my nail breaks right to the quick. I realize the arm belongs to a nurse who pulls back quickly and winces giving up. I see her face, the pain I just caused and wonder what has happened to me. Before I can think anything else, I black out.

There is one nurse, maybe he has dark hair I'm not sure, but I know him by his tattoo sleeves and his calm demeanor. I almost trust this stranger and try my hardest to be compliant with his requests. He tells me to keep my hands still, I can't grab at the cords.The cords are everywhere, I want nothing more than to yank them off and jump out of bed but I can barely feel my body. The tattooed nurse leaves and there is shuffling around me. Something is happening but I cant tell what. There is panic rising in me, should I fight back or brace myself? Before I can decide something is jammed hard and fast into one of my nostrils. I am filled with fear and rage. I am sobbing, flailing and they strap my wrists to the bed. I feel completely helpless and alone. 

Another nurse sits somewhere in my peripheral vision, she types on a computer with her back to me.  She talks to me without turning around telling me how sorry she is. She tells me she can't free my hands because I keep yanking my tubes. I continue crying for what seems to be several minutes and she seems to be ignoring me so I'm surprised when she comes to my bedside. 

"Promise me you will not grab at your tubes?" I nod my head. She frees my wrists and explains to me how important that tube is. I black out before she is finished.

Some bits of consciousness are so brief I'm not sure whether they are nightmares or reality. I struggle against searing pain in my sides as it feels like something is jammed in between my ribs right under my arms. There is something hard tied onto my hands and feet and it is bothering me. I just want it off, just want to rest. I am trying to hold my head up but my neck feels like rubber. There is something wrong with my vision.  My head feels strange and my hair feels like a matted nest rubbing my scalp. The nurse on the computer that freed my wrists talks about washing it and hopes she can loosen the tangles. There are flowers, a stem of baby's breath tied to the rail on my bed. My friend put it there I think. I try and write notes to people unsure of why no one can understand my handwriting. A man who I think might be a doctor wants me to try texting but I cant seem to get my hands to work correctly. In my head, I am talking circles around everyone asking a million questions, telling them exactly what I want but they usually guess wrong. I just want John. 

There are flashes of the pictures taped to the wall, Me, my husband, my close relatives, friends. Smiling. The faces that stick out the most are my children's, my baby, he's not even 1 yet. Why? I see the pictures every time I wake. They comfort me. But why are they are taped to the wall? Have I been here long? Am I staying? I just want to hold my baby. I hurt for him. The ache and longing can't be dulled like the pains in my sides.  Something is not right. I need to be taking care of my baby but I'm helpless. In my foggy, irrational state between black outs and being awake I wonder if I am pregnant. The last hospital stay had to have been when I was in premature labor. Yes, I must be pregnant and the baby for sure has to be distress. I try to ask John every time I see him but no words come out. The words circle endlessly in my brain, "Is the baby ok? Is the baby ok?" John is the only one who can decipher what I'm thinking, the words I mouth to him. He keeps telling me Joel is fine, not to worry. I shake my head. I have to make him understand, I ask again. I need to say it a different way, I rack my cloudy brain like its a demented game of charades.

"Am I pregnant?" I touch my stomach.

"Pregnant?" He repeats making sure he heard me. "No, you're not" he looks at me with endearing and tired eyes, watery blue just like my youngest son's. 

"Are you sure?" I mouth. He nods. I breathe a sigh of relief. That thought has tortured me for days. I can let go of the hallucination, seeing a baby fighting to live in my womb. I black out.

My friend comes to see me a lot. She talks to me and tries her absolute hardest to understand me and make me comfortable. I write notes back to her. I write that I am doped up and she laughs. I tell her I want a cherry slushie from Sonic. I can't remember the last time I had something to drink, the thirst is next to unbearable. What else can she do? my friend wants to know, anything at all. I touch my hair. It feels so uncomfortable like its in knots all over my head. Could she wash it? Comb it?

"A haircut? You want a haircut?!" she guesses. I nod, wondering if this brilliant idea is even possible. Do they let you get haircuts in the hospital? My friend gets out her phone immediately.

"I'll text Julia, I know she would be thrilled to do it!" she says about the stylist that we share.

I'm not sure how much time passes but the next thing I know Julia is there. She's the kind of stylist who is an angel, in the past I always walk away from her feeling refreshed and knowing that I was listened to. I'm happy to see her. She works through my hair with gentle patience giving me the pixie cut only narcotics could've given me the courage to request. I've always loved the look of this cut on other people, what better time than now? It feels so freeing to be rid of the tangled mass of hair. There's a spot where the leads were stuck on my scalp that is stripped of hair and Julia is careful to leave the surrounding hair long enough to cover it. I feel grateful for her visit and that my friend took such good care of me.

It's not long after the day of my haircut I know I will be leaving. I am awake more and more but there are still gaps in my awareness. My bubble of reality has grown a little larger. I know my mom is here and is preparing to leave with me

I am being pushed down a long bright hallway that is beginning to fill with people, all lined up on either side. One by one they turn to me and smile and begin to clap. They are all clapping and cheering and waving. I slowly smile pretending to know what is going on. I am surprised but happy to accept the gesture. I am leaving so I should be happy, although I'm not exactly sure where I'm going. I don't think I'm going home though. 

There's a man who reminds me of my old pastor who looks overjoyed to see me waiting at the door. He has tears in his eyes. He talks about God and miracles. He must know me but I have never seen him before. Later I'm told this is the same ambulance driver that successfully executed my risky transport from another hospital nearly a month ago. 

****

I chose to write this post this from a first person point of view so the reader can experience it the way I did. If some parts were puzzling at first then I've achieved my goal. I didn't realize what was happening or how serious my condition was until I was transferred out of ICU and weaned off all the heavy sedatives. I must have asked the people around me a million questions trying to piece it all together. As they would tell me different bits of information and stories it would unlock parts of my memory and ultimately the above account was what I was left with. This is probably one of the most terrifying yet relieving phenomenons I experienced. To have went through so much without being mindfully present is both a blessing and a curse. 

I often have the thought that this portion of my hospital stay was harder on my family than it was on me. I know that they were emotionally suffering along side of me and sacrificing energy and self care many times just to be with me. My family and close friends spent countless hours in the waiting room. My husband would not leave except to shower and nap in a bed for a few hours at home or at the nearby hotel where my mother in law kept my kids. He had a cot in the waiting room where he would try to rest and eventually they let him stay in the room with me. The strength that he had to have and the fear I know he lived with during this time breaks my heart. However, it also conjures a deep gratefulness to have such a devoted, selfless man sharing life with me. 

Although I was getting better and no longer in immediate danger I still had a long road ahead. As I was moved from CVICU to LTAC (Long Term Acute Care) more challenges started coming and I was fully awake to them. This next leg of the journey proved to be the most difficult.

Keep Reading...

The Stories We Don't Tell

Everywhere I look there is an excuse not to write.

Countless books to read or rooms to straighten or times my children need me.

I've been a little stuck and the real truth is I'm not sure I can finish so I just never start. There's this idea kicking around inside my brain and writing about anything else feels untrue and forced. While my last post, which was some time ago, was about moving on, I also feel the need to revisit my memories in the hospital and share them.

I hesitate, more like stall for months, to do this for a couple of reasons. I don't want to be perceived as dramatic, morbid or attention seeking. I've tried my hardest to bat this idea away.  I've filled pages of my journal of what I experienced and that helped tremendously with moving on. I've tried to yet I still can't help but wonder who else could benefit from hearing a patients perspective. I think about healthcare workers and families undergoing tragedy, people on the outside wanting to help but not sure how to. I think about those who are support people for the chronically ill or elderly and spend their days running back and forth to the hospital or nursing home. I wonder about people who are blissfully unaware of situations like these who may be curious and fearful. I've fed myself the line that not all stories need to be told and some details are better left unsaid.

But I've often wondered what happens to our stories if they aren't told.

This brings me to my second hesitation. I don't want to dredge up sadness for close family members and friends who are doing well to leave the events of our experience in the past. In our household, we have come to end of using the phrase "when you were the hospital..." I feel very fortunate to have went through those events with a tribe of amazing people around me. It has brought us closer together making us appreciate each other and life in general so much more. I would never intentionally want to bring them an ounce of pain. To those people I very gently say: you have express permission not to read. I will still feel supported by you if you chose not to relive this story through my words. I've tried weighing out the importance of sharing our stories and being vulnerable with preserving and protecting loved ones feelings and privacy...and it's a tie. I'm just not wise enough to decide so I'll try my hardest to be discreet and genuine at the same time. My hope is you will not find it insensitive.

So without further ado, here is the first part of my mini memoir:


CVICU


If you want a refresher or haven't followed my story from the beginning this post written while I was still in rehab may be a better starting place.

Day 73 and Counting


Thank you for going on this journey with me. I can't begin to tell you what it means to me. I may have said it a million times over but its worth saying again: my people are what got me through this insanely difficult time. God's grace has never manifested itself in so many different ways. If you're here, taking the time to read and understand this, that includes you.