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. 


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