Written October 7, 2010  8:54 pm

Anita was up, dressed and off the vent by 8:30 a.m.  She had an Occupational Therapy (OT) session, focused on eating breakfast.  She then had a Physical Therapy session, which was followed by a short Recreational Therapy session.  She then ate lunch.  In the afternoon she had an OT session which focused on home requirements/accommodations.  Anita then returned to her room and watched her afternoon Soap.  She then ate dinner, and participated in a Skype video call with family members in Midlothian.  She then read the latest Caringbridge guestbook entries, and watched a DVD (Northern Exposure episode).  Anita retired to bed and remained off the vent until 9:30 pm, for a total of 13 hours off the vent!!!

Caringbridge. What a wonderful way for friends and family to stay in touch during trying times.  John's postings provide a touchstone for him.  His daily updates keep our friends and family in the know and allow John more free time away from the phone.

But the best part of the Caringbridge is the well wishes , prayers and encouragement it provides me.  John pulls up the site each night before he leaves for his room at the Shepherd Center.  He either reads me the postings, or positions the computer so that I can see them.

There are so many.  Some nights I fall asleep before getting through them all.  It's wonderfully overwhelming.  I am surrounded by love and prayers.  I feel it. The well wishes warm my soul and keep me motivated.  The stories of the boys, Trudy, and the happenings at home, make me smile, but weigh heavy on my heart, making me long for my old life.  Will I ever get it back?  There is sadness , wondering what lies beyond The Shepherd Center for me.  But the Caringbridge inspires me.  It is my night light that helps me get through just one more night.  I will never be able to thank you all enough.  Now...for jut a little while.

Written October 6, 2010 7:21 pm

Anita had another good day.  She was up and dressed and ate a good breakfast.  She went off the vent at 09:00 a.m.  Anita then had a pet Therapy session with Maisy, a friendly Rottweiler, which was very much appreciated.  A meeting with Assistive Technologies followed.  She then ate lunch.  In the afternoon, she had a group therapy session with other patients.  Anita then participated in a Skype video call with her sons, her mom, and her cousin.  Anita then read the latest Caringbridge guestbook entries.  Anita is touched by and feels the many good wishes and prayers heading in her direction.  She looks forward to hugging and thanking everyone in person.  She also thanks everyone for watching out for and supporting our family, including Trudy, during this time away from home.  Anita then retired to bed and remained off the vent until 8:30 pm, for a total of 11.5 hours off the vent!!  She then rested for the remainder of the evening.

There are many service dogs here at the Shepherd Center, helping some  of the working staff perform their jobs.  Golden retrievers, Yellow Labs, Black Labs.  They are beautiful, but they are working, so I am not supposed to pet them.  I've always had a dog in my life. It's a comfort to me to just observe these  magnificent canines.

I miss my dog.  I think of her often, knowing she would be here if she could.  Helping me with my recovery.  Trudy's soulful eyes looking up at me. Her slick black  head resting on her spotted paws.  Understanding me.  Loving me just the way I am. Wanting no more.  Well.... maybe a treat.

Animals are good for the soul.  My visit from Maisy, the "therapy dog" was the best therapy I've had at Shepherd.  Maisy is a huge black and tan Rottweiler.  I heard her collar jingle as she came into the therapy gym door at my back.  I was side lying on the mat in PT when she arrived.  Her owner asked permission for Maisy to visit.  I joyfully accepted. This warm heavy dog jumped up on the mat and spooned me.  It was wonderful.  What a gift.  She stayed there for a good 5 minutes, nuzzling my left hand (my weaker upper extremity) encouraging me to pet her. 

I smiled ear to ear and did the best that I could.  When satisfied with my "performance", Maisy jumped off the mat and sat on the floor looking up at me.  She was beautiful.  Working at the Shepherd Center, I was sure she'd seen more than her fair share of suffering.  But her eyes didn't show it.  There was a kindness in those brown eyes.  An understanding that went beyond human comprehension.  Maisy didn't ask for one more rep on an exercise.  She didn't pity.  She just knew.  What a blessing to get a visit from such a kind soul.  Dog therapy.  The best yet.  Thank you Maisy.  Now....for just a little while.

Written October 5, 2010

Anita had another busy day today. The day started with coming off the vent at 7:30 am.  She then showered, dressed and ate breakfast.  She had a Speech Therapy (ST) session in the morning, followed by a Recreational Therapy (RT) evaluation.  After lunch Anita had another ST session, followed by another PT session.  She then returned to her room, watched some Soaps and remained off the vent until 5:00 pm, a total of 8.5 hours off the vent!!!  She then returned to bed and rested for the remainder of the evening.

A shower.  At last.  Another something that I used to take for granted.  It's been almost two months.  I am ready to feel the water flowing over me. The way I used to wake up.  Maybe I will do better in therapy today after participating in my old morning routine.

Of course I can't take my ventilator buddy into the shower, but today I am unhooked early and my tracheostomy is covered.  I can't let the water flow down over the top of my head, but there will be a hand held shower head rather than a bed bath.  Bring it on!

My OT arrives promptly at 7:30 a.m. to evaluate my showering abilities.  She transfers me by hoyer lift into a special shower chair.  Its seat is horseshoe shaped, open in the middle, allowing for "undercarriage" washing. I am wheeled into the shower room which is large enough  to be a car wash for compact cars.  The entire room, sans ceiling, is covered with medical grade beige tile.  There are two handheld showers and the floor slants down to a huge drain in the middle of the room. Voices and noises echo as if we are standing at the edge of a canyon. It's sensory overload for me.

The kind therapist removes my hospital gown and turns on the faucet.  The water feels sharp against my skin and I discover I can't feel hot or cold.  My OT picks a comfortable temperature and sprays me down.  She squirts liquid soap into a washcloth that is placed in my hand.  I can't squeeze it enough to wring it out. I am only able to wash the tops of my thighs somewhat effectively with my right hand.

Reality slams me head on once again.  I can't do this.  Bathe myself. I certainly never pictured this as part of my path right now. But I said can't.  That word is not welcome at the Shepherd Center.  My OT picks up the washcloth and finishes where I have failed without a bother.  She doesn't mention my inadequacies, but rather, starts a conversation about favorite soaps, lotions and shampoos.  Her kind distraction is welcome and blocks the lump in my throat and the tears in my eyes.

Despite my dependence in this basic life skill, I am delighted to get away from the bed bath.  It feels so good to be clean.  I am transferred back to bed where the nursing assistant dresses me and hoyer lifts me back to my power chair.  I can take myself to the therapy gym now, with clean hair and a renewed determination.  I can do this.  Now...for just a little while.

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.