"The Kayla" - Monday, May 30, 2011 - "Memorial Day"

Kayla Quote:  "May your heartaches be forgotten.
                          May no tears be spilled."

Short Synopsis:  Kayla did a 360!  Uncle Chris and cousin Susan visit her and bring her spirits up.  She plays games with them.

Long Story:  At 7:00 in the morning, it is pouring rain.  Rain is a good thing as droughts are scary.  People say they don't like the rain but for me it is a blessed thing, a good omen.  Drench the earth please and thank you oh dearest God.

Today Pops and Lori leave to head up to their New Hampshire paradise home on the lake.  They have been a wonderful support system.  Our dishwasher has been broken so all of us have been doing the dishes by hand, side by side.  Mike is always happy when his parents are about.

In the basement is a new wooden laundry stand.  Mike, on his quest for all things "green" and good for the environment is now hanging his wet laundry on this wooden stand to save the energy that would have been used for the dryer.  I respect all of his new (and old) thinking but I am not going to give up my dryer!  It looks wonderful seeing his few clothes hang away!

I locked in the cats as I am planting the public island down below.  This year I put in pink petunias and a sweet potato plant.  Beauteous!  The lawn looks fabulous and very green.  This is the tail end of Spring and a good time for beauty in the northeast.

Mike finds out that Medicare will cover eight hours of home care if we need it when we bring Kayla home on her assisted device.  We will have to figure out how much help we need.  Since I am not working now, I can cover my daughter for many hours.

Every year I go to the Memorial Parade with my dear friend Nancy.  We roam up and down the crowded street and feel very patriotic.  There is usually a "fly by" with a military plane that is quite fast, breaking the sound barrier.  It rumbles through your body and you realize that this is a great country to live in where there are freedoms found no where else in the world.  For me, the top medical care has saved my daughter many, many times.

I see Steve Palmioto and his big brood.  His wife Mary Ellen is on a truck in the parade waving to us.  I see my dear friend Lisa Conway too.  The sun is out and it is hot.

At 4 p.m. I drive down to visit "the muffin."  I go up to our corner to inspect again.  There are kids running around with our little blackboard but they put it down.  I take it and write "Are you here Debbie?  Are you here Beth? Stephanie"

Am pleasantly surprised when I see Kayla in a special waiting room playing a card game UNO with Uncle Chris and cousin Susan.  There is lots and lots of laughter.  They stay for hours!

I am sent out to buy some chicken parmesan for Kayla.  It is a favorite food made extremely well at Famiglias.  In fact, all the small hole in the wall restaurants along the street outside the hospital have some of the best food in the world.  This is New York City after all.  Only the best little eateries survive.  The best flan is just up the way and I have tried flan everywhere.  There is no comparison anywhere else.  "Carrot Top" has the best recipe and it is smooth with no curdles.  Perfect!

I leave for Tarrytown at 9:30 p.m.  There is no air conditioning.  It is broken.  They give me a small, funky fan.  I sink into my couch bed and look out at the Hudson River...
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On the internet they are reporting about Violet's leg band, the one that has caused her a lot of trouble.  It is quite swolen and looks painful.  The belief is that it has been on her leg for more than four years.  The research says that it was put on October 3, 2006, her hatchling year, in New Jersey near the Delaware Water Gap as part of an ongoing study of hawk migration patterns.

Later, in October 2010, a wildlife photographer photographed Violet (presumably - red-tailed hawks all look alike) and her leg was swollen with the band jammed halfway up her shin.  He brought it to the attention of nature authorities.  There was talk about capturing the bird and removing the band.  Five months later her leg was suddenly worsening.  Experts felt capturing her would be impossible.

The 40-year study for migrating hawks revealed a reduction in fall red-tailed hawk migration probably due to climate change, not a reduction in hawk population.

Experts believe that Violet probably sustained this injury in the last year from a bite from her prey, such as a squirrel.  The swelling pushed the band up from her ankle to her shin where it lodged.  Sitting on her eggs made her more sedentary and probably worsened her condition. 

According to Dr. Bunting, a wildlife veterinarian, "the swelling could be due to scar tissue or fluid retention, neither of which is life-threatening, and it is not clear what role the band is playing in the injury."  When they inspected her leg up on the New York University ledge, they found there was a tiny bit of space between her leg and the band.
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To:  Mordechai
From: Stephanie
cc:  Steve, Ross, Rabbi Cohen

Re:  Your Mom

Mordechai:

Are you telling me that she is still at Columbia Hospital?  That is great news - they give the best care.

Kayla is progressing physically but she is depressed so it affects her overall state.  She needs to help herself and doesn't listen to anyone around her.  This is problematic but Mike and I keep trying to reach her and help her.  Her anxiety is her number one enemy.  Physically she is walking, talking and eating again.  She no longer has a trach but her lungs still need support as she recovers from pneumonia.  She has a hole in her throat which will close up over time and it has a patch over it.  She walks with physical therapy around the hall pushing her luggage cart machine device.

My plan is to keep loving her and making her happy with the little things she wants.  She knows exactly what she desires - a certain fruit smoothie or some special shampoo for her hair.  My overall plan is to improve her nutrition and help her to become physically stronger so she will be in a better state to receive a heart.  As a smart mother, there is nothing more that I can do.  I also plan to have meetings with key people to become part of the team.  They have left me out and it pisses me off!  Now they will see the power of an angry mother who wants life for her child.  They are off and running in directions which I don't believe in.

Let your Aunt Debbie know I am up on the 7th floor and would love to say hello to her.  I keep writing messages on the chalkboard to Beth and will now include messages to Aunt Debbie.

The triathlon?  Yesterday I surprised myself and did the 14 mile bike run of the course with ease, no problems.  Did it in an hour and there were many up hills.  The tri is on Sunday, June 5th - less than a week away.  I have not been able to train, but I am sure all the walking up New York City hills by the hospital and up the back stairs behind the elevators has kept my fitness up.  I did keep up the swimming training over the last few months.  Normally I would have done the bike course 10-12 times before the race but this time, I have done it only once, so far.  Taking care of Kayla has sidelined my life, but I will prevail!  I will do the race and not worry about it - just have fun and concentrate on finishing reasonably.

We have 7 people from our Wolfpit Running Club who are signed up for the race - 4 men and 3 women.  Rick, Joe, Robert (first time) and Dave are the men.  Women are me (have done it twice), Kathy (this is her 4th time) and Lisa (3 or 4 times as well).  This is the 5th year of this now very popular race.  It had to be closed off at 400 participants.  The first year it had 200 entrants. 

I train mostly with Kathy, one of my dearest friends and a tremendous role model.  She is 62 and a far better athlete than me!  We did the biking together yesterday and we had great fun!  I am fealess on the dowhills (it scares her) yet she is far stronger on the uphills.  She generally finishes a few minutes ahead of me but she pushes me and that is grand!  We also swim together all the time.  The running club is a second family for all of us, having forged friendships for over 35 years.  All of us have one common thread - we like to live healthy, fit lives.

Are you keeping up with your running?

Hope you and your family are well,

Regards,
Stephanie

"The Kayla" - Sunday, May 29, 2012 - "Lost Pile of Dreams"

Kayla Quote: "And may you always be a dreamer.
                          May your wildest dream come true."

Short Synopsis: Kayla is desperate and who wouldn't be with a failing heart in her body.  She is tethered to a machine which pumps every bit of blood through her veins and organs.  She is in chronic physical pain.  She is depressed.

Long Story:  Ok, I have had enough.  God is not good.  Why has he taken my beautiful, precious daughter and given her this much pain?  I have this one memory of when she was 3 years old.  She is standing in front of me and Mike as we sit on our couch.  Across her beautiful face is a big smile.  She is full of promise.  She is happy and confident.  Her sweet, fat legs are bare and I want to squeeze them with love.  She turns around smartly and marches off to her room in exuberance.  She is on a mission, a mission only a 3 year old can be on.  She has no idea about death or defeat.  She has no idea her heart is not perfect....but for this day, it is!  It is beating well.  It is her own heart and the doctors have given it great strength.

All of this is gone.  Kayla is now an adult and full of pain, misery and fear.  She is playing the waiting game.  Will a new heart come along or will she languish and be taken by some quick infection?  She is strong again...well as strong as one can be on an assisted device.  She fights with everyone.  She is difficult.  Ha!  These are the reasons she is still with us.  She is now 26. 

Kayla had dreams and they are torn away from her.  She tells me in her quiet moments....Mom...I wanted a family.  I wanted someone to love.  I would like to have a child.  I would like a career.  I really like selling and marketing.  All my dreams are gone.

I have a pile of lost dreams as well.  I see the musical recorder on the top of my dresser.  I love music. I love writing.  I am good at a lot of creative things and I, too, have lost my dreams.  I do not have the recognition that I seek.  My family around me beats me down.  They are afraid of my writing.  They don't like the kiss and tell all that I am all about.  They want to hide the family secrets.  They are embarrassed by things. 

I am not.  I don't care what people know about my private life.  I say it is universal, that all families have trials.  Maybe they are different but they are there.  Only my son Thomas supports me in what I am seeking...and that is a perfect written word, a beautiful musical note.  I walk around with tunes in my head and I need to write down the notes.  I need to write down the special rhyming word.

At least I have myself.  I have belief in myself.  I know why I am here.  God made me a creative person, a chronicler, a journalist.  I knew it when I was 10 and started that first journal, that silly little book with a clasp on it and a golden key to open it up.  Those private words that no one was supposed to read.  My journal had few words but they were inside of me.

I like to be alone, away from the crowd.  I choose the crowd only when I want to or am lonely....but most of the time I am not lonely.  I choose the crowd less and less.  I control my time.

Babee brings in a small sparrow through the cat door.  It is frightened and flapping and tired.  Babee has cornered it next to the closed bedroom door.  This is the room where Mike's parents are spending a few days.  Babee is batting the poor bird who just about given up.  It is playing its last survival card.  It is playing dead.  Babee sits for a brief moment.

I pick him up and toss him outside, much to his dismay.  His eyes are big and black.  He is clawing me but too bad!  I lock the cat door for the moment.  I pick up the tiny bird whose feathers are all a mess.  I cup my hand gently around his body and his heart beats very fast.  He eyes are watching me.  I inspect him and he is not harmed.  I carry him out to the wood pile and place him down gently.

I used to hate these birds.  House sparrows are an interloper brought in from England at the turn of the century and released.  How nice they thought back then.  Not a song bird.  Nothing special.  Hurtful to the natural song bird population.  Killer of blue birds and other more wanted birds.  No matter.

Little Sparrow is alive and life is what I am all about this morning.  In a few minutes, I watch it fly off.  I open the cat door and in rushes Babee.  He is sniffing all over to find the missing prey.
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Today was dedication day for Frank Dolen.  He was a wonderful man, a runner and dedicated community person.  He has died of a rare disease and we are gathered to see the new bench at the old high school field.  Frank used to pick up litter here from teen parties the night before.  He would come early before "fun runs" and clean up the debris.  Frank loved to run.  This is the Wolfpit Running Club family filled with many wonderful people.

There are refreshments and I am choking on a drink and crying.  I am very worn out by my Kayla journey.  Mary Ellen, Bonnie, Liz and Kathy are all kind to me.  I am crying for my suffering child.

Today is the day Kathy and I are supposed to go out on a long bike ride.  Emotionally drained, I have no spirit to do this.  I do not feel capable.  We are going to bike 14 miles riding the actual course of the upcoming triathlon.  I brought nuts, grapes and water.  Kathy laughed at me and said I would not need all of that.  She was right!  We did the course in under an hour.  It was the first time I felt I could actually still be in the race and finish it...my goal.  I guess all those climbing steps at the hospital makes one fit!

Mike and I drive to his brother's house for supper.  Kayla calls with her drama regarding the nurse who wouldn't come to help her for one and a half hours.  Mike tries teaching Kayla Mindfullness-based Stress Reduction techniques over the phone to help her.  The nurse could not be with her all the time.  Kayla needed to help herself.  We set boundaries with her to try to help.

Ha!  Who are we to judge the girl with the four large holes into her body slushing blood through for life?  I would be angry at the nurse too!  Peace and future dreams to you my precious muffin...

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From:  Mordechai Cohen
To: Stephanie Trolle
Sent: Sun, May 29, 2011 9:12:07 a.m.
Subject: Re: Your Mom

Hi.
Great to hear from you.
When is the triathlon?
My mom continues to make slow progress.
My aunt returned.  She will be around for a couple of weeks.
Since my mom has been in a nursing facility and in and out of different hospitals, she no longer has any Medicare days left.  Only Medicaid.  Therefore, since al the LTAC facilities are in New Jersey, she won't be admitted.  So now they have to hold her until a Medicaid bed opens in NY in a facility which meets her immediate needs.  When my aunt or someone she recognizes is in the room she performs on command.  But when no one is there, docs and nurses can come and go and they see nothing and they only go by the book (scans and stuff).
What's the latest on Kayla?
Thanks for keeping in touch.
All the best,
Mordechai

"The Kayla" - Saturday, May 28, 2011 - "Grabbing a Break"

Kayla Quote:  "May you always walk in sunshine
                         slumber warm when night winds blow
                         May you always live with laughter
                         for a smile becomes you so."

Short Synopsis:  Kayla finds comfort with her mother and with anyone who will help her out of her pain.  Why would God give one person so much pain?

Long Story:  I have been washing dishes by hand as our dishwasher has gone kaput!  Pops and Lori are the best grandparents.  They give and give as best they can to two very desperate and worn out parents who are trying to keep their adult daughter alive.  Kayla's heart is getting weaker and weaker and no one can stop the downward slide.  The waiting game is a desperate one.  You keep hoping you can keep all the other organs in good shape as you wait - the brain, the liver, the kidneys, the digestive system.  Sometimes it becomes clinical.  I wish there had tours for high school students to come to the hospitals to see all these sad people languishing as they wait for an organ...as they slowly slip away.  The need for more organs is astronomical and it's the young who donate the most.

Kayla is unusual as there are not that many young people on the waiting list.  Mostly it is men in their 50s and 60s who need a heart.  Not too many 26-year-olds but still....there are some.  On good days, Kayla travels around the hall to introduce herself to the other youngsters who need transplanted hearts.  All of their stories are unique and sad yet they have spirit and desire life, however they can get it.  They have their dreams for every single day and every single breath is precious.  You gather strength from each new patient you meet.  They know your painful journey as you know theirs.
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Babee is hiding under my bed.  He has a favorite spot that he nestles into.  It's a place where I have stored a soft blanket.  All three cats fight over this spot.  When one finds a nice sleeping space, he leaves his scent there and the others want to garner some napping time there.  Napping places are coveted especially if they are safe.  Babee is the king of finding safe spaces.

I set up my bike and go around the neighborhood for a few miles.  The triathlon is only a few weeks away and I wonder if I can compete.  It feels absolutely grand.  I am surprised at my physical strength.  Must be all those steps I have climbed up in the back stairwells of the hospital.  I am more fit than I thought.

I text Jeffery and we go to Town & Country to buy flowers together for our gardens.  Then we come back and he gets a complete tour of my flower and vegetable garden.  I show him the baby catalpa tree that is now 10 feet tall but very skinny.  It was a seed that found its way there at the side of the fence of the vegetable garden a few years previously.  I had even tried to pull it up as a weed until I realized it was a young tree spawned from one of Connecticut's tallest catalpa trees in our front yard.  That catalpa has been hit by lightening quite a few times and is still with us. 

Last summer there was a huge explosion and a fire in that catalpa when a sudden thunderstorm came up and lightening struck it.  Thomas and Mike were in the livingroom and they heard and saw it. 

Standing next to Jeffery now, I hug the thin baby tree.  He laughs as I say, "I am a tree hugger and lover!"

We drive back to his house and I give him ideas for his garden.  He considers me some sort of expert though one always learns new stuff all the time.  No one is truly a knower of all when it comes to gardening.

As we continue our plant inspections, Daniel shows up after a 5 mile run and drives me to Nature's Temptations first,  "for a few minutes."  Since it is his place of work, he cannot seem to leave without a few minutes of working, even on his day off!

I want to go back to my house! 

Daniel entertains a family, mixing his lunch juice drink from the juice bar.  The cocktail is full of many things - vegetables and fruit and he skillfully grinds them up in special machines....kale, celery, coconut water, mango, pinneapple, blueberries, peanut butter.  This is his liquid lunch but he gives samples to the family in little cups.

I am growing impatient but I think we are about to leave....NO!  The family wants their own juice drinks!  Aargghhh!

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At home, I try to straighten out the bedskirt and discover the burrowing Babee!  I touch his soft, velvety fur...

Kayla has a long list of special things she wants and on it is a coffee coolata made with skim milk. The closest place to get it is in Yonkers off the Saw Mill Parkway.  I discover this on-line.  I get dizzy...she has so many requests of things that she wants.

Finally arrive at the hospital.  I go to inspect the 5th floor "cozy corner."  On the sill, the chalk board eraser has been shredded, probably by some small kid who has played with it.  There are only a few small bits of chalk left. 

I scribble - "Beth - You still here?  Kayla progresses.  How are you and your Mom? Steph"

The waiting room is totally packed but it is not the same.  Our special hospital family has dispersed and we have given up our corner.  Every seat in the large room is filled with people waiting.  In our corner, another Jewish family has taken up residence.  It is empty now but there are blankets strewn across the chairs and Hebrew reading materials are scattered about.  I feel empty.

Kayla is having a decent day despite the pain from last night.  She has an oxygen canular in her nose to help her breathing.

I go to Famiglias and get her a slice of pizza.  The little eatery in the big common space at the front entrance to the hospital is closed for renovations so now they keep the 2nd floor cafeteria open on the weekends, but there is no pizza there...the absolute requested item today!

I email Mordechai -

Mordechai:

I have been busy with Kayla's care at the hospital, plus have my most wondeful in-laws here spelling me so I have been able to do gardening and rest and loads of other demanding work!  I have not been able to visit your mom the last bunch of days.

Am wondering - is she still in the ICU or have they moved her to a long term facility?

Beth and Steve's mom got a blood clot in her heart a few days ago.  Have not been able to get the latest update on them, even though I have called.

Regards,
Stephanie

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I go to the end of the hallway...to my special reprieve...to the best spot in the hospital.  I want to see the shimmering light reflect off the Hudson River and the glistening George Washington Bridge. There is a round Jewish man studying his bible and I am disappointed.  He looks up and he is annoyed with me as well.

I guess I have to share my place.  Damn...

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Pip and Mama hawk are pulling apart food together.  Shredded pieces are swallowed with delight. You cannot even tell what they are eating but there are feathers everywhere.  Must be a delicious pidgeon.