Written September 21, 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 ten (10) minutes each.  Speech therapy adjusted the tracheostomy tube bulb temporarily (0.5 hour) in the early afternoon to check Anita's vocal cords/ability to speak.  She showed good results and was pleased to have the opportunity to talk with the medical personnel assembled and with John.  Speech Therapy again adjusted the tracheostomy tube bulb for 0.5 hour in the evening, which gave her the opportunity to talk with her sons, mom, and sister-in-law, which was a great comfort to all present, the highlight of the day. Anita will remain in ICU thru tonight, and as previously noted, decisions on next steps re:ventilator weaning program/rehabilitation will be forthcoming this week.

Vent weaning.  Sounds simple enough. Just unplug the machine and practice breathing.  Like riding a bike.  Right?  Not hardly.  I was excited at the prospect of banishing my noisy friend, but the ventilator had a firm hold on me.  The vent was my muscle, pushing air into my lungs, filling them like balloons.  It was keeping me alive, but I hated it.

For weaning, I took a ride in the hoyer lift to sit in a chair.  It was difficult to sit up straight with all the pillows, tubes, IV lines and muscle weakness, so an abdominal binder was wrapped around my ribs (like a girdle) to help me sit up straight.  The tube was pulled from my trach and I was told to breathe.  I learned it's impossible to take a deep breath without muscles.  It was like sucking air through a straw.   It was as if someone put a pillow over my face and I couldn't fight them off.  Frightening.  My brain focused on being plugged back into my "life support".  Each second seemed like a minute.  Minutes like hours.  I tried to be mindful, but that's hard when it feels like you're drowning.  John and the nurses and therapists were so encouraging, cheering my 5 minute victory.  I was relieved when I was re-attached to the ventilator. 

I felt like I failed.  I have never been so scared. How was this going to change?  What was going to happen to me? My family?  Once I calmed down, I prayed.  I visualized 6 minutes tomorrow.  Deeper breaths.  Pray.  Visualize.  Now...for just a little while.

Written September 20, 2010 8:16 pm

Anita had a good night's sleep last night.  As is now normal, she sat up in the armchair for a number of hours during this morning/early afternoon.  She performed breathing tests, and managed to breathe without the ventilator for a test period of five (5) minutes, the first small step on the road to weaning her off the ventilator.  She visited with family members and various friends during the course of the afternoon.  She was excited to see the "Anita's Bracelet" poster and photographs of all the ladies donning their bracelets.  Thanks to "B" for making the poster/bringing it to the hospital.  Anita will remain in ICU tonight, and as previously noted, decisions on next steps re: ventilator weaning program/rehabilitation will be forthcoming this week.

Our friends are amazing.  Thanks "M" for your creativity to design and create the Anita bracelet.  Her idea is that wearing the bracelet or using the keychain will keep me in the thoughts and prayers of folks.  And what fine folks they are.  Other friends donned their bracelets, took photos and made a poster that John hung on my wall.

I have a prayer shawl from another state.  Prayers have been put in the Wailing Wall in Jerusalem for me.  I was given a St. Jude Medal (the saint for lost causes).  I can't name all the churches that have me on their prayer lists. Even some of my docs and nurses have asked if they could pray for/with me.  Are you hearing us God?

I think there is some divine intervention going on here.  Despite tubes, ventilators and IVs, I remain hopeful and peaceful.  I do have my moments of doubt and despair, but they always pass.  The sun continues to rise and I know that I am blessed with a wonderful family and friends.  The docs are doing all that they can.  If it all ended today......no regrets.  Now...for just a little while.

Written September 19, 2010  8:49 pm

Anita had a good day today.  She slept well thru the night.  She was quite alert and in good spirits throughout the day. She sat up again in an armchair for a number of hours during the morning/early afternoon.  She visited with family members and various friends during the course of the day.  Thanks to all who visited for the cards, photos, etc. and to N for the beautiful quilt.  Special thanks to K who provided some OT/PT to Anita during her visit.  Anita will remain in ICU thru tonight, and as previously noted, decisions on next steps re: ventilator weaning will be forthcoming early this coming week.

I am overwhelmed by the number of cards, Caringbridge posts, and visitors that surround me.  John tapes the cards to the wall and reads me all the encouraging thoughts and wishes daily.  He is my link to the outside world.  My rock.  Steady and strong, he visits every day.  I wonder how he gets anything else done. 

I see the worry on his face and I want to reach up and hug him.  I want to tell him I am ok, just go home.  But that's not true.  I need him here and I am so thankful that he stays.  Right now I am trying to keep the faith, but it's not easy.  Somewhere deep inside me, I know everything will be all right.  I want to tell him I am at peace, no matter what.  But I can't.  All I can do is smile, nod my head, and try to convey my thoughts with my eyes.  I look into his for hope, encouragement to make it through another day.  Now...for just a little while.

Written September 18, 2010  9:31 pm

Anita had another good day today. She was quite alert and in good spirits throughout the day.  She again sat up in an armchair for a number of hours during the morning.  She visited with family members and friends and watched some television during the course of the afternoon.  She will most probably remain in the ICU thru the weekend, with decisions on next steps, re. ventilator weaning program/rehabilitation forthcoming early next week.

Rehabilitation.  I like the sound of that.  As an OT, I worked in Rehab.  Spinal cord injuries, head injuries, strokes, joint replacements, and other maladies.  My life has witnessed more tragedies than most, but each journey touched me deeply.  I have seen the resilience of the human body. And the human spirit.   I've also witnessed miracles in the medical world.  Folks who defy the odds.Now I am the one needing intervention.  There are admission requirements for Rehab.  I have to show potential for improvement.  I need to tolerate several hours of Rehab each day.

I'm scared.  I am unable to hold my head up.  I can move my right wrist but not much else.  I can't even breathe on my own.  Passing a Rehab evaluation does not look promising.  John encourages me and tells me my "therapy friends" are assisting him in finding a place for me.  The elephant in the room s the ventilator.  No one wants to take me and my pachyderm friend.  Too risky.  A facility could get stuck with me for a long time.  John remains hopeful and optimistic. But the OT in me knows what happens to those who don't qualify for Rehab and are unable to be discharged to home. A Nursing Home.  I try to come to grips with this.  Maybe this would be better for all.  I would be taken care of.  My family could go on with their lives and visit on the weekends. No.  I will hold out for a miracle.  For Rehab.  I will kick this vent to the curb and pray hard.  One breath at a time.  Now...for just a little while.

Written September 17, 2010  9:40 pm

Anita had a good day today.  She slept well through the night.  She was quite alert and in good spirits throughout the day.  She sat up in an armchair for over four (4) hours in the morning, and had some breathing tests  performed which showed  additional relative improvements in her breathing ability.  afternoon.  She visited with family  members and friends and watched some television during the course of the afternoon.  She will remain in ICU thru tonight, which is not necessarily a bad thing, i.e. room comfort, medical coverage, etc.

Sitting up in a chair.  A positive.  Try to clear the lungs.  The head.  An easy task for most.  Not so for one who cannot sit unsupported.  I remember the ordeal of getting out of that bed everyday.  An arduous task, made possible by modern technology.  The Hoyer lift.  The closest one gets to a carnival ride in the ICU.

I was rolled side to side so that the nurses could slide the mesh fabric under my torso. The cloth that would suspend and support me during the "ride."  This sling was then clipped to a frame with me cradled in the middle. I was unable to support my head independently.  I had an entourage to manage my neck, fold my arms across my chest, and captain the vent tube, feeding tube, IV lines, catheter, and my wayward legs.  After securing all my accessories, the nurse cranked up the lift, so that I was hovering over the bed.  Magic.  Then the transfer device was wheeled over to the chair, where I was slowly lowered to sitting.  I would be unhooked from the arms of the lift, with the mesh sling left in place for the return trip.

This was quite the production that soon became routine.  Sitting in a chair.  Not an amusement park ride, but definitely a three ring circus.  My new trick.  Part of my new normal. I had to keep reminding myself.  I was moving forward.  Now....for just a little while.