Pray Attention

Written October 10, 2010 8:40 pm

Anita had a quiet day today.  Sunday is a day of rest at Shepherd Center, i.e. no therapy.  She was off the vent at 6:00 am this morning.  She continued to rest until 9:00 am, whereupon, she ate breakfast, dressed, and got up.  Anita participated in a Skype video with family members and took some phone calls from friends.  She then ate lunch, followed by attendance to a non- denominational church service. She remained up in her wheelchair for the afternoon, read the latest Caringbridge entries (Thank you for your many wishes and prayers), watched some TV and ate dinner.  She retired to bed and remained off the vent again until 10:00pm.

Church.  John and I decide to make the journey to the 4th floor and attend the service.  I am able to drive myself there as long as someone else pushes the elevator buttons.  It's "freeing" to get away from the Neuroscience Unit, which I affectionately call, The Island of Misfit Toys.  It takes me awhile to back into the elevator.  My neck stiffness makes it difficult for me to maneuver in small spaces.  Shepherd has an awesome "fix it" staff that repair corners and elevator walls scraped up by unskilled drivers.  I figure I am good job security for these engineers.

The service is conducted by volunteers from several churches around the Atlanta area.  There is a piano, music, and a message just like real church.  Some Sundays there is even a choir. The worship is attended by many.  A few wear helmets and stare blankly into space. Several patients are in power chairs, like me, and some are able to push themselves in manual chairs.

I find it hard to focus on the sermon.  The music is nice, but I am distracted by the "congregation".  The ventilators keep time with the music. I look around at the sea of patients and visitors.  Most are younger than me. I can't help but think of all the stories contained in this room.  I wonder what has happened to all these folks. I want to know what they were like before their accident or illness.  What do they miss the most?  How are their families?  Their pets? What have they lost? What have they found? And, what are their hopes?  Chances for recovery?

The music stops.  The silence brings me back. The message of the sermon today is hope. I glance around again and see some smiles. We are all here.  There is hope.  If I had a magic wand, I would wave it and heal us all.  But I don't.  So I'll just pray.  Now...for just a little while.

The Shepherd Center

Written October 9 2010  8:54 pm

Anita was again taken off the vent at 6:00 am this morning.  She dressed and ate breakfast.  She had an Occupational Therapy (OT) session in the morning, focused on trunk control.  She then had lunch, and then had the afternoon "off".  She remained up in her wheelchair for the afternoon, took another 'trip' around the Shepherd Center, read the latest Caringbridge guestbook entries, took some phone calls from family and friends, watched some TV and ate dinner.  She retired to bed and remained off the vent until 10:00 pm, another 16 hours off the vent.  She will repeat the 16 hours off the vent on Sunday, and as previously noted next steps regarding ventilator weaning will be evaluated on Monday.  Sunday is a day of rest at the Shepherd Center, i.e. no therapy tomorrow.

The Shepherd Center is amazing.  Both from the perspective of a patient and from that of a former Occupational Therapist.  There is a full size recreational gym here for wheelchair sports (which are incredible to watch).  There is an Olympic size swimming pool, where the occasional scuba diver is spotted.  Family areas abound.  Some have pool tables.  Others have areas to play games with kids, get free coffee and snacks, or just watch TV (lots of football to be viewed here in Atlanta).  And all of it is completely wheelchair accessible.  There are lifts to lower patients into the pool.  All the tables adjust up and down to accommodate wheelchairs. Hallways and doorways are wide and forgiving "freeways" for wheelchair users.

The artwork that lines the hallways and foyers is not the standard "bolted to the wall" nature scenes from hotel rooms.  The art here is museum quality with different themes on every corridor.  There are sculptures, paintings, photographs, and collages of animals, birds, flowers, and abstracts.  It is absolutely beautiful.

There is a gift shop too, full of treasures I view through the glass window.  I won't drive myself inside for fear of breaking something.  I'm not that good at maneuvering my "semi" in tight spaces.  But I am able to operate my power wheelchair independently and cruise the "hotspots".  I find hope around every corner.  The family members I see look tired but determined.  The staff and volunteers are always kind and enthusiastic.  The patients are supportive of each other and we share victories and setbacks with genuine excitement and concern.

Hope and humor abound here.  Even though I am 9 hours away from family, friends, and Trudy, I am grateful for this opportunity to be helped and cared for here at the Shepherd Center.  Now...for just a little while.

Written October 8, 2010  8:54 pm

Anita was taken off the vent at 6:00 a.m. this morning.  She subsequently was out of bed, dressed and ate breakfast by 8:00 am.  She had Physical Therapy (PT) session, followed by an Occupational Therapy (OT) session (painting).  She then ate lunch, and had the afternoon "off" due to internal meetings for the various therapy departments.  She remained up in her wheelchair for the afternoon, took a trip around the Shepherd Center, read the latest Caringbridge guestbook entries and watched some TV.  She retired to bed and remained off the vent until 10:00pm, for a total of 16 hours off the vent.  The plan for the weekend is to have some therapy on Saturday morning, to repeat the 16 hour stretches off the vent on Saturday and Sunday and to evaluate next steps regarding ventilator weaning on Monday.

Vent weaning.  One of the hardest things I have ever done.  Ranks up there with Graduate School and Childbirth.  Each morning I am "unplugged" and my ventilator buddy stops his noisy cadence.  The silence invites fear to come into my room and squeeze tightly around my ribcage.  It takes me a few shallow breaths to realize that I can do this.  One breath at a time. I am always dizzy at first, but this dissipates quickly. The pulse oximeter (which measures the oxygen in my blood) shows that I am within safe parameters, but that does little to comfort me.

I move forward and "drive" myself to the therapy gym, leaving my "life support" in my room.  The therapists and other patients distract me, but I always feel a little breathless.  As I look around the gym here, I count my blessings.  Some folks will never be able to wean from the vent.  Some can't feed themselves.  Some are taking their first independent steps in months.  Some can't remember where they are. And yet, this room is full of smiles, laughs, hope.  It truly is the most amazing place I have ever been.  Disability is a "real leveler" (quoting John).  Your background (sex, religion, education,  family life) doesn't matter here.  We are all working towards independence.  Friendships and bonds are formed quickly.  And laughter is always welcome.

Laughter is good exercise.  It fatigues me.  But, despite my breathlessness and fears, I relish the freedom of being off the ventilator.  I can laugh out loud. And I can talk freely without the vent. And I do.  I talk all the time, to anyone who will listen.  I know I am talking too much, but I can't seem to stop.  When I am unplugged each morning the words just pour out of me.  If I could hold a pencil, I'm pretty sure I could write the next Oprah Book selection.

I asked my Pulmonologist when he thinks I will be free of the vent.  He assures me that I will know when its time.  When it bothers me to be hooked back up at night, he says I'll be ready.  I can't imagine ever refusing the ventilator at night.  It's my pacifier. I don't think I could rest without it.  When I am plugged in I can't talk.  But I can let go and relax.  Grateful that I don't have to think about breathing.  I can just sleep.  Now...for just a little while.

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.