Written September 16, 2010 8:48 pm

Anita slept through the night.  She was quite alert and in good spirits throughout the day.  She had a short bout of Occupational Therapy (OT) in the morning.  She was then sat up in an armchair for a couple of hours, and had some breathing tests performed, which showed some relative improvements in her breathing ability.  Speech therapy adjusted the tracheostomy tube bulb temporarily in the early afternoon to check Anita's vocal chords/ability to speak, which again proved positive.  Decisions on ventilator weaning program/rehabilitation will be reached in the next few days, specifically facility/location.  In the afternoon a bronchoscopy was performed through the tracheostomy to verify that there was not a collapse in her trachea, which could have been a cause for the low oxygen levels experienced the previous night during the MRI test.  The trachea was found to be normal.  some sputum samples were taken from her lungs to be checked for infection, and to ensure that the appropriate antibiotics are being utilized to combat a bout of pneumonia, which was discovered after the MRI incident.  The bronchoscopy procedure took less than a half hour, and Anita was in good spirits after the sedation wore off.  She visited with family members and friends in the late afternoon and received "range of motion" exercises in the evening prior to retiring for the night.

Pneumonia. Damn.  That news scares me.  Being on a ventilator and contracting a respiratory illness is bad news.  My nurse rallies round and orders a special breathing treatment.  I am rolled side to side to allow the staff to don a plastic vest on me.  It is velcroed snuggly around my torso.    When turned on, it vibrates against my ribs with the goal of breaking up mucous in my chest.  I still don't have muscles to cough, so I am suctioned after the treatment to clean out my lungs.  Gross. I hate depending on people to clear out my bodily fluids.  That is a perk of being in ICU.  It seems there are many folks to help with this and they do it with a smile. Thank God for them.   I'm scared about pneumonia.  This is a good sign though.   It means I do want to live. 

I have a voice now.  Although it's only temporary, I now have a say in my treatment.  The bulb is adjusted occasionally, permitting  me to speak.  I don't know why it can't be permanently modified to grant communication.  It must have to do with fatigue.  Seems I always have more to say than time allows.  It saddens me when the bulb is closed back so that I can't speak.  Lip reading is so frustrating.  Reading lips is like speaking a foreign language.  I understand, but those I am speaking to do not.  It's worse than charades.  A guessing game and an inadequate way to communicate.

Imagine being allowed to talk only once a day for 10 minutes.  What do you say?  I lie here thinking of all I want to say, and the questions I want to ask.  As soon as the bulb is adjusted, it seems I forget all that I planned to vocalize.  Instead I ask about the kids, my dog, my family.  I advise John to take care of himself. And of course I ask for a Coke.  I'm thirsty.  I want a Coke with chewy ice that I can sip through a straw.  I want to be able to talk all the time.  I count my blessings that I have a voice. I am heard.  Now....for just a little while.

Written September 15, 2010  7:47 pm

Anita is resting comfortably this evening following a traumatic night spent in ICU.  During the course of the MRI last night, Anita's oxygen levels dropped suddenly (for a few seconds), which was followed by a substantial increase in her heart rate and blood pressure.  She was rushed to the ICU whereupon she was stabilized.  Her blood pressure subsequently dropped below acceptable levels, she was then administered with an IV Saline Bolus (i.e. quickly administered) whereupon her blood pressure increased to acceptable levels.  An x-ray and CT of her chest/lungs was performed, which did not reveal blood clots (embolisms), a potential source of the low oxygen levels.  An EEG was performed on her brain and showed normal results, i.e. no seizure activity.

Despite the night's events, Anita was quite alert and in decent spirits throughout the day.  She visited briefly with family members and friends and was at up in an armchair, as well as receiving "range of motion" exercises in the afternoon.  Anita will remain in ICU overnight and was resting comfortably as of this evening.

I hear the doctor say, "We will have to keep a close eye on her."  I notice the Indian accent right away.  I also observe that it is dark and John is here.  Something must be very wrong.  I remember from my days of working in Rehab, that it's usually bad news when the Indian doctor is called in the middle of the night.  My next thought is, what happened? The last thing I remember was going into the mouth of the MRI.  How did I get here?

I'm back in ICU.  Stepping up in the world.  Back with my old nurses.  It almost feels like coming home.  Seeing old friends.  Bigger room with bigger windows.  Prime hospital real estate.  But, what the hell?  I am going backwards.  I just want this nightmare to end.  How long do I have to endure this?  I don't understand.  It's so hard for me to wrap my head around.  There's too much time to think, but I can't stay focused long enough to finish a thought.  My thoughts are scattered.  A puzzle that I am trying to put together.  The corners are there, but key pieces are missing.   I wish someone would come in and tell me what is wrong and what we have to do to fix it.  Put it all together.  Find the link.

I'm trying to do my best. Focusing on the positives.  I have wonderful friends and family supporting me.  Caring docs and nurses here providing excellent care.    I imagine wings enveloping me in a protective cocoon. Escaping into sleep. A place where I walk and talk and laugh and feel.  A place where nature surrounds me with abundant colors, smells, textures, sights and sounds.  My old world.  So vivid to me in my slumber.  Now...for just a little while.

Written September 14, 2010 8:30 pm

Quiet day today.  Anita visited with various family members and friends through the course of the day and watched some television.  An MRI will be performed tonight to check lesions/inflammation against previous MRIs.

Into the rabbit hole again.  The only plus about an MRI is it's an outing.  An adventure.  I get to leave the floor and explore other corridors, elevators, departments. I'm pushed down the hallway in my bed, still flat on my back, but it's good to get out.  ICUs are rather stoic and secluded.  When I leave the floor, my senses are overwhelmed.  The smell of microwave popcorn makes me yearn for my old life.  The overhead lights glaring at me between  institutional white ceiling tiles, burn my eyes, causing me to squint at the brightness. The loud ding of the elevator door startles me. I'm like a hunting dog on steroids, keenly aware of sights, sounds, and smells. My head is ready for the hunt, if only the body would cooperate.

The elevator spits me out at the X-Ray department.  I am pushed into the outer chamber of the MRI scanner.  It's dark in here.  No windows to the outside.  Just one that allows the technician to look in on the man-eater from the safety of the "control booth". I hear the monster gurgling as if underwater.  I don't look into its mouth.  I don't want to see the narrow passage that's going to swallow me for the next few hours.  I get lifted and slid onto the narrow table.  My head is strapped in tight, which is pretty frightening, since it's one of the only body parts I can move independently.  They cover my eyes with a washcloth, stick earplugs in my ears and send me into the beast's mouth. 

I keep my eyes closed and try to relax.  Deep breathing is my first choice for stress management, but due to some paralysis and a ventilator, that's not possible.  So, I play the alphabet game.  I remember it from long car rides as the "picnic game".  "I am going on a picnic and I'm bringing an apple....I'm bringing an apple and a bandana...." The letters bounce around in my head. I am aware.  I am aware and brave.  I am aware, brave and creative.  The beast keeps cadence with each letter by hammering, dinging, buzzing.  The earplugs aren't working, but I can't tell anyone.  I am aware, brave, creative, and determined.  The noise makes it hard to focus.  My thoughts wander. Why is there a letter x?  Why aren't there more words that begin with x, q, or z?  These thought make me panic. So, I focus on the letters again.  I am aware, brave, creative, determined, and enlightened.  It works.  I actually fall asleep before reaching the letter "h".  At least I think I do.  Now...for just a little while.

Written September 13, 2010 8:38 pm

Anita slept well through the night.  She was again quite alert and in decent spirits throughout the day.  She showed functional improvement in her right arm/hand, and right foot.  At one point, she requested a pen and paper to convey her thoughts, which were not clear (to me) by lip reading.  Her first two (2) written words in some time were "shot by...".  After a brief confusion, it became evident that she was directing our oldest son to get his senior portraits done by a friend of ours.  She had a short bout of Physical Therapy (PT) in the afternoon and managed to sit up on the side of the bed while assisted.  The attending doctor is a strong advocate that Anita move (have moved) her hands/arms and feet/legs as much as possible during the day.  Accordingly, all nurses/therapists (OT, PT, Rec, etc.) who plan on visiting Anita will be required to give her a bout of therapy during their visits!!!  Anita's PT exertions tire her, and she rested for the remainder of the day, while watching some television intermittently.

The television fills my brain with news every morning.  It flows into my head like the fluids from my IV that course through my veins.  It's there, but I don't need to digest it.  The "bus stop" report every morning reminds me just how long I have been here.  My kids are back in school.  The summer is over and my Junior and Senior boys are growing up fast.  Without me.   There are college applications, senior pictures, beginning of the year forms to be completed, lunches to be packed, decisions to be made.

The reality of my situation is overwhelming.  No one talks to me about the difficulties the boys are going through.  I know John is taking care of them, but he's here a lot.  So, who's taking care of him?  I guess everyone is trying to spare me any anxiety.  But my frustrations are real. They are mounting.   I can't talk to my kids.  I can't cry.  I can't scream or stomp my feet or shake my fists.

I hear the weather report for the school day.  If I were home I would recommend a rain jacket today.  The boys would grunt or chuckle before running out the door without one.  I recall what my neighbor says to his son, "if you're going to be stupid you gotta' be tough."  Oh how I wish I was home yelling at the boys to get out of bed right now. But I can't.  My roles; wife, mother, daughter, sister, friend, dog caretaker are non existent.  I am a helper and a peacemaker in need.  Can someone help me?Now...for just a little while.

Written September 12, 2010  9:14 pm

Anita had another good night's sleep last night.  She visited with various family members and friends throughout the day.  A highlight of the day was a visit from a therapy dog (labradoodle) from the Delta Society Pet partners, which Anita quite enjoyed.

Dogs.  I've always shared my life with one. My first was a beagle mix who watched over me as I grew up.  I got her when I was just 5 and we shared many adventures. She taught me to notice nature and I taught her to be street smart.  Tippy used to follow me everywhere.  She learned to wait patiently for me outside the local 7-11, where I would get a candy bar and a Slurpee, and always reward her with a chewy, chocolaty Tootsie Roll.  There were no leash laws back then, so my best friend accompanied me on all my travels.  She patiently listened to all my teenage angst with knowing, soulful eyes.  She was always there for me. We picked right up where we left off when I came home from college. She knew me better than anyone.  After her death, I thought I could never replace her.  I was right.  Her unique "pupness" could not be duplicated.  Eventually new paws would scratch at my heart though, and I would invite another dog into my life.

I think my dog Trudy sent this little pup to visit me today.  She knows I need a fur fix.  The therapy dog jumped up on my bed and John helped guide my arm to him.  My fingers tangled in his curls and when he looked at me with his brown eyes, a genuine smile softened my face.  This is so much better than any medication.  Our visit was short, but I won't forget the pressure of the dog on the bed, his healing eyes. Therapy dogs.  Their restorative powers are magical.  I am not sure man will ever understand the width and depth of a dog's healing potential.  I am grateful for all the dogs who have graced my life.  I am thankful for the nurturing visit today providing hope and solace for this ravaged body, frustrated soul.  Now...for just a little while.

Written September 11, 2010 7:35 pm

Anita had a good night's sleep which continued through the early morning. She was quite alert and in good spirits for the rest of the day.  Her vital signs (i.e. temperature, pulse, blood pressure, etc.) were stable. She visited with various family members and a number of friends for short periods of time throughout the day and was engaged with her visitors.

John tells me it's time.  There are many friends who want to visit and he feels I am up for it.  I want to see them, but I don't want them to see me.  I know I must look horrible.  I can't talk.  I can't even wave.  But somehow, that doesn't matter.  All these folks are praying for me, leaving me messages on Caring bridge, caring for my family.  I need to let them in.  I need to see their smiles, feel their comfort.

John funnels folks in just one to two at a time.  It's really awkward in the beginning.  Worse than a first date.  A lot of silences, but the ventilator fills the void, making sure no one forgets it is there.  John does a great job of keeping the one-sided conversation flowing. The sentiments are kind and helpful.  I like hearing about the kids and my dog. The anecdotes about them give me hope that there is some normalcy in their lives.  I love seeing John get a much needed hug.

We are so blessed.  The love from friends and family that surrounds us is holding us up.  I learn there is even a sign-up sheet to walk Miss Trudy everyday.  My mom tells me that she's quickly running out of room for storing all the food that is coming in. The comfort this provides is incredible.  I will never, ever forget these kindnesses and I hope someday to pay it back, forward, sideways, and upside down.

Thanks to all of you for keeping us going.  Thank God for friends and family.  You guys are the greatest! You help keep me going.

Now...for just a little while

Written September 10, 2010 8:47 pm

Anita had a restless night's sleep, and spiked a fever early in the morning.  She also exhibited low blood pressure and low hemoglobin levels.  She was administered with an IV Saline "Bolus" (i.e. quickly administered) and blood transfusion to address the low blood pressure and hemoglobin levels respectively.  X-ray (lung), blood and urine tests were also performed to check on the cause of the fever and low blood pressure/hemoglobin levels, results to be forthcoming in the next days.  Anita visited briefly with family members in the early afternoon, but was quite tired and rested the remainder of the day.

The results of the most recent spinal fluid test (September 9, 2010) were received back from the lab.  On a more positive note, the results of the Myelin Basic Protein (MBP) levels test showed in the normal range. a decrease from the MBP levels from the spinal tap fluid test on September 4, 2010, which were found to be higher than acceptable.  This indicates that the steroid/plasmapheresis treatment program has had the desired effect, and that the nerve demyelination activity appears to have ceased.  The treatment plan for the foreseeable future is to commence with a steroid taper program (i.e. weaning off steroids), monitor clinical neurologic progress, and protect against fevers, infections, and respiratory issues as appropriate.  We are hopeful that Anita has reached the "bottom" with this disease and is now on the road to recovery.


I've been sick a long time.  At least a month now, but it seems longer.  I lie here day after day, listening to the hum of the ventilator.  Not talking.  Not eating.  Not moving.  The lines of fatigue around John's eyes seem to get deeper everyday.  I wish it would just end.  John has cast a net to keep me from drowning.  Every time I start to go under he wills me back.  But for what?  I'm having a hard time envisioning the future.  I don't own a wheelchair.  I don't want one.  I'm too weak to even sit in one.  Does this damn ventilator have to follow me home?

I have to choose better thoughts.  I need to hope, pray, rest. With sleep there is escape. So, I close my eyes , looking for dreams of walking on the beach, searching for sea glass.  The waves keep the rhythm while the wind paints my sun screened legs with sand.  Sweat and humidity cover my body like dew on the grass. Walking in the surf, seeking sea glass.  It's like trying to find a puzzle piece. When one piece is found, another follows.  And once the finding begins, it's hard to stop.  Little tiny shells, polished pebbles all shades of brown can be mistaken for glass.  But the discriminating eye can tell the difference. Slowly.  Walk slowly. The breeze dries the ocean on my skin, leaving salt crystals behind.  I stop to cool in the surf and gaze out on the expanse of the sea.  My feet get sucked into the sand a little deeper with each retrieving wave.  It feels like I am trying to root here.  I see pelicans on patrol, dolphins playing and fish jumping.  The roar of the ocean drowns all other sounds.  The briny smell of fish and the nostalgic scent of Coppertone fill my lungs. I lick my salty lips and chew a few grains of sand which feel like small pearls to my teeth.  I promise myself I will get back here.  This place where my magic is.  The beach has persevered through many storms.  I can too.  Now...for just a little while.