Written September 30, 2010 7:51 pm

Anita had a very good and busy day today.  She was dressed and up in her wheelchair for over six hours during the day.  She started her day with a session of Occupational Therapy (OT) during which she had her vision tested with good results, and practiced her handwriting.  She then had a vent weaning session during which she remained off the ventilator for over three and a half hours.  During the vent weaning session, a Montgomery Valve was installed which allowed Anita to talk.  A medical conference with the lead physician and Case Manager took place during the weaning period.  A Speech Therapy (ST) session took place after lunch during which Anita drank some water and ate some chocolate pudding, the first food ingested orally in weeks!!!  Anita quite enjoyed the chocolate pudding, and is looking  forward to a Coke, which is on the agenda for tomorrow.  A Physical Therapy session followed in the gym.  She then returned to her room and watched some afternoon soaps.  In the event she received visits from her second cousin and her brother, who is visiting for a few days.  She was quite tired by evening's end and finished the evening with a viewing of an episode of The Office.

I remember being able to speak again.  And I vividly recall the chocolate pudding.  Wow.  The simple things we take for granted.  Being mute is so isolating. Folks tried to include me in conversations.  I nodded or mouthed words (extremely frustrating) in return. Now the Montgomery Valve allowed my wishes to be heard.  My voice was weak, but I could talk! I spoke to John, my roommate, the docs, the nurses, the therapists, the cleaning crew, other patients.  Anybody who would listen.  It was exhausting.   I was able to verbalize away during the day, but at bedtime, the valve was removed. Usually I was so tired I didn't mind.   I had all night to think of more things to chat about the next day.

My Speech Therapist clearly heard my choice of pudding flavors (chocolate). I wasn't hungry at all, but being a true "chocoholic", I thought the sweet treat might stimulate my appetite.  It didn't.  I seemed to have no spit and I couldn't find my swallow muscles. The therapist scooped a half spoon of pudding and brought it to my mouth.  I had a hard time manipulating the custard in my mouth. When I finally pushed it to the back of my mouth, it felt like I was swallowing a bolus of 10 saltine crackers.  Who knew pudding could be so painful.  I was told I did well, but further tests needed to be done before I am allowed to eat solid food.  I wasn't hungry anyway and eating sure seemed like a lot of work.  So, I continued to receive my meals via the feeding tube.  Now...for just a little while.

Written September 29, 2010  7:34 pm

Anita started her rehab program with becoming familiar with operation of her motorized wheelchair.  She then had sessions with PT, OT, and Speech Pathology.  Anita was in good spirits and pleased to get started in earnest with her rehabilitation.

I remember feeling so much hope.  Finally starting rehab! It wasn't hard to leave the Shepherd ICU.  I hadn't been there long enough to get close to the staff.  The Neuroscience Unit became my new home.  We were like the Island of the Misfit Toys (a reference to Rudolph the Red Nosed Reindeer movie).  Most of us weren't classic spinal cord or head injury patients.  There were a few, but for the most part our diagnoses were things like West Nile Virus, Craniotomies, surgeries gone wrong or just plain bad luck.  And some of us suffered maladies yet to be named.  But I made it.  Out of ICU at last.

My expansive new room could house 4 patients, however I only had one roommate.  I hadn't had a "roomie" since college. The first thing I noticed was the case of coke she had under her bed and the open one on her bedside table.  This looked promising.

She was on a ventilator too, but was more mobile than me.  She had a regular wheelchair and was able to get in and out of bed with minimal assistance.  I was still transferred by hoyer lift.  I was well used to this "carnival ride", but this was hoyer lift Shepherd style.  There were tracks in the ceiling and a box-like mechanism that was able to slide on the tracks.  This box housed the cables that were lowered and then hooked onto the mesh fabric sling that was placed under me.  With a push of the button the sling folded, supported and lifted me.  I could be suspended over my bed or moved via the tracks to my wheelchair.  I felt like Peter Pan.  There was a sense of freedom in "flying" around the room.

When I wasn't flying, I could lie back and view the beautiful artwork on the ceiling tiles.  If the tube to my television was placed near my chin, I could maneuver it to my mouth (through head movements and bizarre facial expressions) and control the TV by sip and puff.  In my new home, the nursing routine was the same.  Feeding tubes, catheters, turning every two hours, bed bath, and trach cleaning.  I continued to battle the ventilator monster, but I was fighting him on my turf now.  My new home.  Free of constant monitoring.  Now...for just a little while.

Written September 28, 2010  8:11 pm

Today was a day of transition for Anita. In the morning, she was fitted out with a motorized wheelchair.  At noon, she was transferred out of ICU to the regular floor.  She then went through another series of evaluations by the various disciplines, Speech, PT, etc. on the floor.  Tomorrow, her rehab program will start in earnest.

Wheels!  I am mobile.  Not quite free, but perhaps it's just a roll away.  The therapist suggested  I start with a sip and puff power wheelchair, due to my decreased movement  This chair is operated by blowing or sipping on a straw attached to the chair's "brain."  Truly amazing.  I recall a patient I had once who controlled his whole environment (TV, lights, bed, computer, even his van) through a  sip and puff apparatus or switches that were operated by head movements.  As a therapist, this technology thrilled and fascinated me.  As a patient, not so much.

Thank goodness for my husband, advocate, hero who was adamant that I try a toggle switch mounted on the right side of the chair.  I could wiggle a few fingers, so once my arm was placed in the right position, my fingers could grasp the switch and I could move forward. My ventilator is attached to the back of the chair, so it follows me like a dark, ominous shadow.  I am issued a suction machine (even has my name on it) and am told it needs to be with me at all times.  Someone has to follow me with this device in case my mucous secretions seize up on me.  At least I am up.  It is a step, or a roll forward.   I wasn't allowed to go too far today, but I have dreams of returning to nature.

As an OT working in Rehab, we encouraged patients to set goals.  There was a universal goal that most patients expressed, "I want to walk again."  Well guess what?  So do I now.  With my patients, I never acknowledged that this might not be possible.  I tried to set smaller goals to distract them and provide small victories on the path to wellness.  I feel the need to elaborate, be more specific with my goal.  If only I could verbalize, I'd tell them, "I want to walk out of here with a Coke in hand, completely independent to appreciate family, friends, and nature just like I used to."  I promise to never, ever take anything for granted again.   I quickly realize I am exhibiting 2 of the stages of grief/loss as outlined by Elizabeth Kubler Ross; denial and bargaining.

Today I realized that therapists know too much to be model patients.  I just need to let go, let God.  Now....for just a little while.

Written September 27, 2010 7:08 pm

Anita had a somewhat mixed day today.  In the morning, Physical Therapy (PT) and Occupational Therapy (OT) performed an evaluation of her muscle/functional capabilities.  Speech Pathology worked with Anita on swallowing ice chips and noted improvement in her swallowing capabilities since the initial evaluation.  Anita managed to remain off the vent for an hour and a half in the afternoon.  However, she became quite anxious and her blood pressure increased.  She was quite tired thereafter  and rested for the remainder of the day, with her blood pressure returning to normal levels.

Evaluations.  I am the new kid on the block and everyone wants a piece of me. I am asked to wiggle my toes, move my arms, stretch my fingers.  I feel like a failure.  I can shrug my right shoulder and barely move some of the fingers on my right hand.  That's it.  I don't think I am making a very good first impression.  I want to scream, "Don't give up on me.  I will work hard."

I can breath on my own for one and a half hours now.  That's progress isn't it?  And I swallowed some ice chips.  They felt like cold jagged rocks tumbling down my throat. The melting water tried  to choke me. Rather scary since I don't have the muscles needed to cough, or even to clear my throat.  As much as I want an ice cold coke, I am afraid to try to swallow now.

John is encouraged by my progress.  As an OT I know better.  I write the note in my head.  "Patient shows minimal progress", or "slow, steady progress noted.  Will continue with current goals."

I was so hopeful when I arrived here in Atlanta.  Everything was new.  But the realty is, my abilities haven't changed much.  New personnel, but basically the same routine.  I miss my kids.  My dog.  My independence.  I want to go home.  But I can't.  I have to stay here.  I have to try harder.  Now...for just a little while.

Written September 26, 2010

Anita had another quiet day today.  Sunday is essentially a day of rest at the Shepherd Center, i.e. no therapy.  However, Anita was taken off the ventilator today for an hour and fifteen minutes, and continues to make progress with ventilator weaning.

Rest.  I am so tired.  How can that be?  I nap several times a day.  I sleep most of the night.  Must be my active lifestyle.  While in bed, I am turned every two hours.  I get a bed bath in the morning. I am transferred to a chair where I sit for all of 2 hours.  My trach is changed daily.  I get meals and meds through a feeding tube.  I watch TV.  John keeps me posted on the "news" I need to hear and provides encouragement.  How can this far from hectic schedule keep me exhausted?  I remind myself that my body is healing.

I do my part.  While resting, I turn my thoughts to nature.  My muse.  My hope.  I miss the outdoors so much.  I visualize walking through the woods with my dog.  Healing thoughts of velvet green moss covering the sides of the paths. I take off my shoes, letting nature's carpet sooth my hot, tired feet.  Birds and breezes whisper to me.  The smell of rotting leaves and trees waft around me as I crunch through hardened paths and step on the occasional stray stick. Peace.  Bliss. I wonder how many people have walked down this path.  What were they thinking?  Did they meander and enjoy the sensual experience of a walk in the woods or did they stride through counting calories, distracted by sweat and labored breathing.

Maybe this is why I am weary.  I walk too much in my head.  It seems I can't get away from myself.  I cannot give up my walking thoughts.  It's my solace.  Now....for just a little while.