LTAC pt.2

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..

Rehab

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. RER 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