Written September 25, 2010  8;25 pm

Anita had a relatively quiet day today.  She had a Physical Therapy (PT) evaluation in the morning and received some range of motion exercises.  She sat up in a wheelchair for two (2) hours in the afternoon.  She was then returned to bed, following which she was taken off the ventilator for twenty five (25) minutes as an initial step in the weaning off the ventilator process.  Weekends at the Shepherd Center are relatively quiet with regards to level of rehab activities, as compared to during the week.  Anita was resting easy be evening's end.

Here I am, in another state, still in ICU.  As usual, John sits vigil during the day.  But something is different.  I'm lying on my back, gazing at butterflies and flowers, words calling to me; hope, faith.  The ceiling tiles are all painted with vibrant colors, scenes from nature and encouraging words.  No two are alike.  A feast for my eyes.  I am so used to flat white tiles with black specks resembling splattered paint.  And sometimes a small stain just to add dimension.  I used to stare at them for hours, trying to make images or shapes out of the dots.  Sometimes the dots seemed to swim in a sea of confusion.  To me they were ICU clouds.

The ceiling tiles here are beautiful.  Some are worthy of framing.  The nurse notices me looking at them and tells me they have all been done by patients in Therapeutic Recreation.  She remarks that I will have a chance to create one.  I smile.  That would be nice, but I have never been an artist and I can't lift my arm or grasp a paintbrush.

As per my paralyzed protocol, she then rolls me to my side.  I can no longer see the tiles, but I see her.  I know she will be back in 2 hours to turn me again. Being paralyzed in bed is akin to spinning on a rotisserie. Before she exits, she casually asks while fluffing my pillow, "Can you cluck with your tongue?"  I try, and to my delight, find that my tongue makes a noise as it slaps off the roof of my mouth.  "Good," she says.  "If we ever try to leave before getting you comfortable, or if something's not right, just cluck at us.  We will figure out what's wrong and fix it."

Fix it.  I like the sound of that.  And I love that I have a "voice" now.  It's very chicken-like, but I can be heard.   And my overhead art gallery is amazing.  I'm still scared, but my new environment is hopeful. They are well used to patients with my deficits and I am medically stable.  Hope is hiding in the ceiling tiles and in my clucks. Now...for just a little while.

 
Written September 24, 2010  9:39 pm

Anita and John departed at approx. 10:15 a.m., by ambulance  to the airport.  They then flew to Atlanta, GA by air ambulance, connecting with an ambulance which arrived at the Shepherd Center at 01:00p.m.  The flight was generally uneventful although Anita's oxygen levels decreased and heart rate increased slightly for a short period of time while reaching altitude.  Her oxygen and heart rate levels returned to normal prior to arrival in Atlanta.  Upon arrival at the Shepherd Center, Anita was admitted to the ICU, typical of the Shepherd Center admissions process for ventilator dependent patients.  During the course of the afternoon, a series of examinations/evaluations were conducted by members of the medical team, including Respiratory, Speech, Neurology, Physical Therapy and Occupational Therapy.  Anita was quite tired after the day's exertions and was resting peacefully by evening's end.  Anita and I would like to take the opportunity to thank the staff at the VCU Medical Center for their kindness and support during Anita's stay over the past weeks.  It was very much appreciated.  Anita now enters a new phase in her recovery, and we look forward to her return home in the near future.

Leaving today.  Not the way I had hoped.  I was holding out for spontaneous recovery.  Walking out the door, surrounded by friends, family and astounded medical staff, squinting in the sun, with a bounce in my step. If only.  My exit happened like a typical medical discharge.  The wait to leave was full of apprehension.  My bags were packed, my ventilator buddy ready for a fast escape.  But there were papers to be signed and docs to find before we were released. Plenty of time to build anxiety.

I was transferred to a stretcher and wheeled out of the hospital.  Outside!  The first time in over a month.  My senses were overwhelmed with the sounds and smells that bounced off the exhaust stained walls of the parking deck.  Not exactly the soothing nature scene I so desperately needed.  After being loaded into the ambulance I could see my mom and sister-in-law on the sidewalk smiling and waving.  I wondered what emotions they were feeling.  I could only acknowledge them with a smile.

The ride to the airport seemed long.  I remember the bright sunlight, the noise of the planes as I was wheeled out of the ambulance.  Helpless.  Sensory overload. 

I was scared.  I like flying, but this was an air ambulance and the sense of urgency was palpable.  I was leaving my past, all that had become familiar in the past month, and jetting into the unknown.  I had no map.  No plan.  The jet was small.  Being on a stretcher, I took up the most room.  John was there.  My eyes locked onto his for assurance, safety. The pilot and 2 medical personnel were the only other occupants.  It was intimate. My blood pressure and vent settings fluctuated with the changes in cabin pressure.  I was anxious.  The nurse asked if I wanted to be "knocked out".  I nodded yes.  The next thing I remember was being pulled out of the ambulance at the Shepherd Center and transferred to a bed in ICU.  My new home.  John is here.  He looks exhausted, but is sitting in a chair in the corner.  I can't keep my eyes open.  We made it.  The next chapter begins.  Now.....for just a little while.

Written September 23, 2010  8:59 pm

Anita made further progress weaning off the ventilator today.  She managed to breathe without the ventilator for a period of twenty two (22) minutes.  She also had a session with Physical Therapy, and sat on the edge of the bed, showing good progress with her balance and strength on her right side.  Speech therapy adjusted the tracheostomy tube bulb for an 0.5 hour in the evening, which gave her the opportunity to talk with sons, mom, and sister-in-law, in advance of her transfer to the Shepherd Center in Atlanta.  Anita and John will fly to Atlanta, GA by air-ambulance on Friday morning.  A nurse and Respiratory therapist will also be present on the flight.  John will split his time between Atlanta and Richmond in the coming weeks.  We are confident that Anita will make good progress in her recovery at the Shepherd Center and look forward to her return to the Richmond area in the near future.

I've always hated good-byes.  I'm surprised I have never tripped over all the loose threads I've left dangling in my life.  I am the one at reunions who joyfully suggests we keep in touch and get together soon.  That rarely happens, but it's more pleasant than a good-bye.

So, how do I say farewell to the boys.  A Hallmark card moment for sure.  But, I discovered life doesn't work like a greeting card.  There was no swell in the music.  No close up.  The trach bulb was adjusted to allow me to talk. My mouth and airway filled with secretions. I was suctioned, and I think my heartfelt sentiment was simply, "do your best," which I delivered as enthusiastically as I could.  My boys.  They looked so grown-up, yet still children.  I think they responded, "see ya".

So much to say.  So many emotions.  The room was filled to the brim of all that was left unsaid.  As it should be.  Life goes on.  Here and in Atlanta.  Now...for just a little while.

Written September 22, 2010  8:43 pm

Anita made further progress with weaning off the ventilator today.  She managed to breathe without the ventilator at three (3) different times during the day, for a period of eighteen (18) minutes each.  Speech therapy adjusted the tracheostomy  tube bulb temporarily (0.5 hour) to check Anita's vocal chords/ability to speak.  She showed good results.  She met with family members and friends in the afternoon.

Anita is now at a point she can move out of ICU to a rehabilitation facility.  However, due to her current ventilator dependence, she will have to be transferred to a facility which accept ventilator dependent patients.  After review of various facilities, it has been decided to transfer her to the Shepherd Center in Atlanta, GA for ventilator weaning/rehab.  This will occur in the next days, after the appropriate planning, paperwork, approvals, etc. have been completed.  Needless to say, this is an additional stress on our family, but we are all on board and believe it provides the best opportunity to Anita for recovery.  We thank you for all the prayers and good wishes you have shown Anita and our family during this difficult time, and ask that you continue to keep Anita in your thoughts and prayers.

Looks like I am going to Atlanta.  Nine hours (by car) away from family, friends, and the awesome care and support I have grown accustomed to.  I am medically stable, but it scares me to think that quadriplegia and vent dependency is my new normal.  I am fretful.  John seems stressed.  Everyone else has that deer in the headlights look.

How in the hell did my once active, crazy life with a husband, two kids, and a dog in the burbs end up here?  Ok Anita, calm down.  Be mindful.  Be thankful.  John and my "therapy" friends have found a place that will work with me.  Help me find more independence.  I am hard-headed, strong willed and I've got my faith, family, and friends in my corner.

I am helpless, but I can't refuse.  Where would I be, where would I go if I did.  Besides I love to travel.  This could be my last vacation.

Stop.  Deep breath....forgot, I can't do that.  Ok.  Stop. Blink hard and think.  My brain feels like it is missing a piece of this puzzle.  The facts:  I'm paralyzed, on a ventilator, medically stable and going to Atlanta for Rehab.  I have 2 boys in High School that need their mother.  This sucks.  My life is out of control.  John assures me that all is arranged.  He is coming to Atlanta with me.  My mom, brother, and cousin will be with the boys.  He has gotten the ok from work.  What a blessing.  My head is spinning. I swallow my tears, my fear.

I decide to control what I can.  My attitude.  I can change that.  I can be grateful for this opportunity to heal.  I can teach my boys about perseverance, faith, and determination.  I can thank John by doing my best.  I decide to let go, let God. Now....for just a little while.