Written October 4, 2010  8:15 pm

Anita had a pretty busy day today.  The day started with a Physical Therapy (PT) session in the morning.  Speech Therapy (ST) then performed a Barium Swallow test to check Anita's swallowing capacity.  Anita passed the test and is now released to eat and drink "regular" food.  an Occupational Therapy (OT) session followed which focused on her ability to feed herself.  A Neuropsychologist then tested Anita's cognitive capabilities, which were found to be in order.  Another PT session followed in the gym.  She then returned to her room and had a vent weaning session in the afternoon during which she remained off the ventilator for over five (5) hours.  She was somewhat tired after the full day of activity and rested the remainder of the evening.

Barium Swallow.  I am familiar with this procedure.  It's done to make sure that the swallow muscles are working so that liquids and solids go into the stomach rather than the lungs. This is a test I hope to pass so I can eat real food and have my feeding tube removed.

Although I have knowledge of this procedure, I have never seen one performed. I am interested to see this first hand, but a little nervous about what to expect.  I am hoyer lifted onto a stretcher and taken to another floor where I am lifted again and placed into a small manual wheelchair.  The chair is wheeled into a small dark room.

My Speech Therapist has a student with her today.  I welcome students.  They are enthusiastic.  Full of questions for their mentors.  And their mentors do an extra thorough job to demo to the student exactly how things are done.  There are always students in Rehab. 

A Barium Swallow test is a live x-ray, so all those in the room (except the patient of course) must don a lead apron.  My therapist comes in and dresses out.  The student arrives a few minutes later with a look of confusion on his face.  He is wearing his lead apron, but is holding a triangular shaped object and looking at his mentor for direction.  It is a lead shield for the thyroid, but my witty Speech Therapist has advised her student it is to protect his privates.  Since the lead apron hangs almost to his knees, he is obviously perplexed.  When he realizes what the triangle is for, we all have a good laugh.  The comic relief is welcome in this small dark room.

With everyone properly outfitted, I sit in front of the screen.   My therapist holds the cup full of chalky liquid to my mouth.  I can see the liquid on the x-ray going into my mouth and then down my throat.  It goes down the right path, bypassing the lungs. I tuck my chin to encourage a swallow. After a few more gulps, I am then fed jello, followed by pudding, raisins,  and crackers to chew and swallow.  I am surprised how difficult it is for me to manipulate food in my mouth. And to push it to the back of my throat. I really have to think about it. Yet another thing I hope to never take for granted.  The x-ray is fascinating.  Watching the internal act of chewing and swallowing is an intimate experience.  Definitely an inside view!

The good news...I pass. I am cleared to eat solid food.  Now on to OT to see if I am physically capable of feeding myself.  Can I get a fork to my mouth?  I'm not passing this test too well. Since I have limited use of just one hand I need a sticky mat so my plate won't slide and a plate guard to keep my food on the plate.  But I can't even get my food to my mouth due to muscle weakness in my arm and I can't hold a utensil.  So, I am given a special cuff that is strapped around my hand with an opening to hold my fork or spoon.  My OT also outfits me with a special hinged device that supports my arm.  Once my arm is strapped into this device I can use shoulder muscles to get the food to my mouth.  Once my tray is set up (all containers opened, long straw in place, food cut, arm placed in hinged device, and towel in lap to catch the spillage) I can feed myself.  But after all the tests, modifications and 2 months of not eating, I find that I am not the least bit hungry.  Now...for just a little while.

Written October 3, 2010  9:19 pm

Anita had a rather quiet day today.  Sunday is a day of rest at the Shepherd Center, i.e. no therapy.  However, Anita did sit up for a large part of the day, while resting in anticipation of more therapy/ventilator weaning this coming week.

Rest.  A coveted commodity here in Rehab World.  A pause.  A respite. Different than sleep. In medical settings sleep is constantly interrupted. I am turned every two hours. Vital signs taken, medications given, feeding tube feedings, trach changing, suctioning, blood taking and the occasional x-ray.  And between all of this, there are dreams.  Some I want to be awakened from so I can escape their dark images.  Others, where I am walking and driving, I want to stay in.  Magically, I am back in my previous life for just a little while.

But Sunday is a day of rest.  There is no rush to get out of bed.  No where to go.  Nothing to do.  It's wonderful to have a leisurely morning.  Until about 11:30 am.  This is when I realize how much of the day stretches before me  with little to distract me.

John is here.  I watch him eat lunch.  We watch TV.  We look out the window.  He reads me the paper.  Idleness leads to dark thoughts.  I can't run away from them, so I decide to sleep to escape them. Sunday afternoon is nap time.

After being hoyer lifted back into bed, I close my eyes and count my blessings.  I am slowly weaning off the ventilator.  I have a power chair and I can drive myself to therapy now.  I finally had my Coke.  John is here.  My mom is at my house "caring" for my teenage sons.  I have a long road to recovery, but I am lifted by love, prayers, and support from friends and family.  Even strangers

I fall asleep while counting my blessings and dream of walking barefoot across fields of grass and pebbled paths.  I'm so grateful to recall this feeling so vividly.  And thankful for the much needed rest.  Now...for just a little while.

Written October 2, 2010  9:14 pm

Anita had a less strenuous day today.  She started the day with a session of Occupational Therapy(OT) in the morning during which she performed some range of motion exercises.  She had a vent weaning session thereafter during which she remained off the ventilator for over five (5) hours.  During the vent weaning session, she again talked with her sons and mother by telephone.  She was quite tired after the vent weaning session and rested for the remainder of the day.

I was able to breathe on my own for more than 5 hours today.  Excellent and exhausting.  Dizzying.  Breathing is hard work.  My weakened diaphragm feels lost under my slumped posture.  I try to sit up straight, but my poor muscle tone won't allow it.

I glimpse my reflection in a polished elevator door.  The power wheelchair is huge, swallowing my emaciated body.  It has become a part of me. A shell I wish I could hide in.  My hair is almost gone and my skin is the color of paste. I am dependent on people and machines for survival.  Despite this I feel an innate drive to fight.  Keep going.  Let go, let God. This too shall pass.  These thoughts roll through my head on a continuous loop.

The days here are hard and exhausting.  The dark is long, but the nights are short, never allowing enough hours to rest.  But I am here.  Hope is here too.  I see it in the determined faces of the patients.  I hear it in the kindness of the therapist's voices.  I feel it in the gentleness of the staff.  And I am surrounded by the support of families, staff and volunteers who roam these halls spreading hope.  Kindness is here and it is not hiding.  Now...for just a little while.

Written October 1, 2010  9:05 pm

Anita had another pretty busy day.  Today she was dressed and in and out of her wheelchair  (for Physical Therapy) for over eight (8) hours during the course of the day.  She started the day with a session of Speech Therapy (ST) during which she got the long awaited Coke, which reportedly tasted very, very good!!!  A PT session followed in the gym.  She then returned to her room and had a vent weaning session in the afternoon during which she remained off the ventilator for approx. five (5) hours.  During the vent weaning session, she talked to her sons and her mom by telephone.  She was somewhat tired after the vent weaning session and took it easy for the rest of the evening.

I finally got my Coke! Careful what you wish for.  The Speech Therapist advised me that the acidity of colas, makes them hard to swallow, and therefore a poor choice for the first fluid consumed in almost 2 months.  But I have been craving and dreaming of that sweet cola taste since August.  Besides, she doesn't know that I am a seasoned Coke drinker.

I remember the ice cold Coca-Cola in a bottle that was opened on the side of the cooler at the store. I'd quickly suck the foam from the top before it could flow over. Then I'd open that package of Lance peanuts and drop a few into the Coke.  The peanuts added a crunch, like ice, but with a warm flavor that tasted like summer baseball  games or fishing from the river bank.

Over the years my Coke consumption has declined, but sometimes it's the only thing that will quench a thirst.  And it has become my new obsession.  I think it symbolizes healing.  Progress.  The therapist brought in the small red, black and white can with a cup of ice.  She pulled the silver tab.  The Coke sighed and then glugged as it was poured into the cup.  My mouth watered as I watched the foam rise to the top.  The therapist opened the bendy straw and pushed it through the ice.  She commented  how this was not per protocol, but she could not deny my request.  She advised me to be careful and only take small sips as she lifted the straw to my lips.

I drew the brown liquid through the straw savoring its cold sweetness. I pushed my tongue to the roof of my mouth and tucked my chin to swallow.  It felt like shards of glass going down my throat.  Who coined the phrase "soft drink".  There was nothing delicate or easy going on in my throat.  My Speech Therapist raised her eyebrows, watchful for my reaction before taking the cup away.  I swallowed air and saliva to try and erase the burn, then I smiled and nodded to her.  I was afraid if I told her how badly it hurt, she would take it away. She smiled as she replaced the bendy straw with a long plastic one and set the Coke on my bedside table.  Now I could access it independently.  It took me all afternoon to finish that Coke, but sure was good.  Progress.  Now...for just a little while.