Tuesday, May 31, 2011

"The Kayla" - Saturday, May 21, 2011 - "Deirdre's Party"

Kayla Quote:  "You're always in my heart, my mind and my prayers.  I desperately, desperately want to see you.  I want to hear your voice."  - Spoken into phone tape by dear friend Jessica Muraca, who now resides in France, 4/11.  It has not been erased and is waiting to be played for Kayla when she gets home from the hospital.

Short Synopsis:  Kayla is on a steady course.  She grows hungrier all the time and she wants her favorite foods and drinks.  Nothing more pleasurable than bringing your child what they need and enjoy.

There are still a lot of issues but we take it one day at a time.

Long Story:  I wake up early and lie quietly in the bed.  Bumpy is jerking in her sleep.  Now there is something to enjoy.  Bumpy is a constant story-teller,  just like me.  We have to take turns and we have this great system.  We hit the other gently on the arm or we say, "It's my turn!"  That is how we try to be fair.

I know what she is doing.  She is telling stories in her sleep.  Her hands are rising up for emphasis.  Her head is swaying back and forth.  Oh!  She flips to the side.  That must be the best part!  The climax!  The gist!  I want to hear her dream!

At 5:30 a.m. I walk out into the Potter back yard.  So this is the new family meeting ground.  The Tarrytown home has been sold a long time ago.  The parents went to Georgia for retirement.  Robert moved to New Jersey and he has lived in several houses.  This is his finest house.  

I see the deck.  I know that deck.  It is in all the pictures with all the siblings sitting around talking.  Funny, I thought it would be on ground level but it is up one flight overlooking the back yard. 

I love the early morning.  It is quiet and the only sounds are the best ones.  I stand to listen.  Which is the loudest sound, seeking my attention and study.  It is a bird in the bush.  He is the loudest.  I stand very quietly and try to look in but he sees me and moves about.  I want to identify him but he is too smart, too fast.  Is he looking for a mate?  It's possible but it's late.  It's not a youngster - the sound is too practiced.  I know.  He is annoyed I am in his territory.

There is a train going by below and I cannot see that either.  There are very thick woods in the back and that is the place I would rather be, deep in there.  The train has the best urgent soothing sound to enjoy.  It would be grand to listen to that as you fall asleep each night.  I hear a rushing water sound...it must be a river!  The woods cover that too.

There are piles of leaves that have been dug out of the flower beds.  Robert's wife is in the middle of preparing the garden for its Spring splendor and summer viewing.  She has plants ready to put in, but she is off doing a Girl Scout weekend with their daughter, Britta, who is 15.

Neither Bumpy nor I particularly need breakfast so I convince her to go walking in the woods with me after a cup of coffee.  She is always game for just about anything.  There are paths back there.  We take off in a direction to the right.  I am searching for the river.  I know it will be flowing very fast and hard from all the rains over the past few weeks.

I try to get down to it but it is difficult as I have Lyme Disease right now and my knees hurt.  No matter!  It was caught early and the three week course of doxycycline antibiotics will wipe it out completely.  When you live in the Northeast this is normal fare.  Everyone is scared of this spirokete that burrows in your body and causes lots and lots of sickness woes.   The trick is to catch it early and then you are as good as gold.  It's over when you hammer it early.  This is the second time I have had it and each time I have not been affected at all.

This time I was a little foolish.  I felt my knee pain and ignored it for a few weeks, knowing full well it was probably Lyme but thinking, well...maybe it is arthritis.  I was too busy helping Kayla at the hospital.  But...hell...you must take care of yourself if you want to take care of anyone else.

The test said it was borderline and the doctor felt strongly it was a new bite, not a flare-up of the old case from years and years ago.
There we were - Bumpy and me.  I went down as far as I could go to the water but there was steep woods and drop-offs.  Wasn't going to happen.  I even could not go up the hill through the trees to get back quicker.  I showed Bumpy that I get down on my butt to navigate harder parts.

Bumpy was the smart one this time.  If I made any single wrong move, my live would be over.  There would  be no survival falling down this slope...

We go back to the path and walk through the woods to the tennis club.  We are going to catch a glimpse of Robert in his tennis tournament.  There are four courts with many men playing.  I see a man with the blue pull-ups on his legs to save the knees, the same ones that Robert pulled up his legs in the morning getting ready.

"There he is...but that looks like a young man.  He moves like a young man!" I say to the Bumperoo.  We watch for a minute.

"That's not my brother," she remarks.

"Yes it it," I say.

"Which one are you looking at?"

"That one over there, playing singles."

Bumpy scans all the courts.  She points her hand to the closest court below.

"That one.  That's my brother.  The one with the headband.  I can tell by the way he moves."

"Oh yeah!  I see."  Fooled.  They both have those blue things on their legs but that other one is playing singles.  Robert was supposed to be playing doubles.

Seeing Robert work hard on the court gives me more resolve to get back to my triathlon training.  Bumpy and I go for additional walking all through the neighborhood before I take off for the hospital.

                     - - - - - - - - - - - - - - - - - - - - - - - - - - 

On my way to the hospital.  No more being lost in New Jersey.  I know what I am doing now.  Kayla texts me she wants a skim milk coffee coolata, one of her favorite drinks from Dunkin' Donuts.

I see how many Dunkin' Donuts I can pass before one last one before the George Washington Bridge brings me over the Hudson from New Jersey.  It's a beautiful drive from west to east to New York City.  Robert lives very close, about 30 minutes away.

Have to keep that frozen drink as frozen as possible.  One Dunkin' Donut, two Dunkin' Donut...ok, this third one will have to be it...

                            - - - - - - - - - - - - - - - - - - - - - - - - 

Bumpy and I are very excited about Deirdre's big surprise party.  Ty has organized the entire thing and he's prepared many special dishes.  The catered food is ready to be served.  We all wait quietly. 

They bring her up the driveway...her blindfold is securely in place.

SURPRISE!  Deirdre is delighted!

Bumpy and I have been planning what clothes we want to wear.  We want to have fun giving our best presentation to the world and this is our world - a family party.  Everyone has put their gifts on the front bench just inside the front door.  Bumpy bought a bunch of gag gifts - geritol, depend diapers for adults, stuff like that.  She adds "reader glasses" which magnify everything.  She wants those back if Deirdre doesn't need them!  Deirdre wants them.  What about the rest of the gags?

"Those are for my parents," Deirdre laughs.  (Later the next day, Mom would remark, "I don't need that stuff!")

I bought Deirdre a nice stylish light turquoise blue tank top with beading in it.  I spent more money than I usually do.  I am thankful for all the time I am spending nights there and they feed me too!  I am known for getting cheap clothing at tag sales and church sales.  This time I went to my new hispanic store up on Broadway in NYC, a few blocks north of the hospital, to see what they had.  The owner knows me and addresses me personally.  She specializes in close-out sales.

I know this top is over the top for Deirdre but I am hopeful she will be interested in it.

When she opens it up, she turns around and gives Jenna, her friend in a white sexy tank top, a cut the throat sign.  But Jenna and I make a plan!  Jenna will go shopping with Deirdre and find a matching top to put over it if our conservative Deirdre won't wear it.  I think the color will bring out her beautiful auburn hair.

If it gathers dust in the Deirdre's closet, I say Jenna can wear it!  It would look good on her too!

Bumpy and I grow tired early.  It's 10:30 and I am to follow her car with my car back to Robert's across the river.  As we go to leave all of Deirdre's friends are gearing up.  They are outside on the stone patio, in the dark, sitting, roaming, drinking, telling stories.  

All of the rest of the family have left for their own homes.  Deirdre and Ty's children and my parents are asleep in the back of the house.   We walk through the laughter...

"Look at this Bumpy!  Wish I was younger.  I feel old.  Can't keep up with this 40-somethings crowd."  

Love stories, oh God, do I love stories!  But  have to go to bed...







 













Monday, May 30, 2011

"The Kayla" - Friday, May 20, 2011 - "The Hawk Collection"

Kayla Quote:  "Kayla will get a beautiful new heart to match her beautiful soul. <3 Janelle, in an email 4/10/11 - Janelle has had her transplanted heart for 22 years and a kidney from her brother since July 2, 2010.  She is 25 years old.

Short Synopsis:  Kayla got intravenous lasix last night to help her breathing.  There was a little fluid on her chest x-ray.  Sh is much better today.  She continues to walk well with her physical therapist.

Kayla is not allowed to shower until after she gets a heart transplant.  This is very, very disappointing to her.  The tubes are large that go into her stomach and there are four of them and this is a wound site that is a direct way for bacteria to get into her body.  There is no way to shower with it.  She has to take sponge baths or use wipes for the next year as she waits for her new heart.

With this in mind, it was incredible for her to have her hair washed.  I have a method of using one of those pink rectangular buckets.  I fill it with hot water and then as Kayla is sitting in a chair, I douse her hair in it.  Then I put it down and wash.  After that I need the help of the nurse - one holds the buckets as the other rinses.  It works out well.

Long Story:  Today Bumpy is off to her brothers and I am off to the hospital and will join her later at Robert's house.  Deirdre's husband, Ty tells me how he is going to do a surprise party for Deirdre's 40th birthday tomorrow night.  She has no clue.  Family and friends are invited and Deirdre will be escorted to the driveway with a blindfold on, thinking she is getting a gift from him.  We don't have to hide our cars and they will be lined up and down on Wilson Park in plain view!  All week many of us have been fooled into thinking that it was going to be a regular dinner party at Valerie's house.

No matter! 

When I tell her, it is obvious that Bumpy loves parties and can't wait to go!

                                        - - - - - - - - - - - - -

All of the company in Kayla's room yesterday makes for a tired mother today.  I arrive at Kayla's room and go to retrieve a round personal pizza for her and a hot lunch for me.  The cafeteria on the 2nd floor is a great resource for those who want to maximize their time with their loved ones in the hospital.  Kayla and I are both exhausted from yesterday's party.

                                   - - - - - - - - - - -

On the chalk board:

"I miss you Steph."  Beth

"I miss you too, Beth!"  Steph

                                 - - - - - - - - - - - -

Kayla and I decide to takes naps, she in her hospital bed and I go out to the new waiting room.  It's not as spacious and nice as the one on the 5th floor.  For days, they have been painting and the furniture is pushed all into the middle of the room.  The couches are old, faded and torn.  The pictures are boring.  One worker is affixing metal wall brackets into a wall to hold up a new TV.   Best part of this room is that spectacular view of the Hudson River.  One huge window covers an entire side except for the metal grated heater across the bottom.

I grab a blanket and lie down on one of the couches, a little embarrassed.  There are no other sleepers here like downstairs, where often you would see family members taking naps.

Am almost asleep...

A woman comes and disturbs me and is annoying.  She asks a lot of dumb questions.  She tells me I cannot be there.  It's not allowed.

I am groggy.

I realize that she is not a worker here.  She is just a strange woman with inappropriate questions.

"Are you staying here all weekend?  Are you?  Are you?"  She is really pressing me now.

I sit up and get angry.

"Who the hell are you?  I don't know you!  It's none of your business what I am doing here!"

She flees...

                  - - - - - - - - - - - - - - - - - - -

Everyone is wondering what sex Pip is.  They are saying we may never know.  Female and male red-tailed hawk youngsters are the same size in the nest in the beginning.  As they grow, females become much larger.  Since the other two eggs never hatched, there is no comparison to measure Pip by - no different size siblings.

If Pip were to be banded, and they have decided not to do this, he could be sex typed.  They would borrow him from the nest at two weeks of age (today he is 2 weeks old).  Alas, it's too dangerous to get to him because the nest is up 12 stories and that ledge is precarious.  He or Violet could be harmed. 

After all that has happened with Violet's leg after her banding, and subsequent swelling and infection - well, it would not be a popular thing to even consider banding Pip.

So Pip is just Pip - unisex!

                    - - - - - - - - - - - - - - - -

I head off to Robert Potter's house with great directions in hand.  It's very clear how to get there.

Umm.....or is it?  This is New Jersey.  Nothing is clear in New Jersey, according to everyone, and especially according to the laughing Bumpy!  Every member of her family has gotten lost going to Robert's house.  And then there's the story of Cyndie's husband going on a long run with no ID and getting lost 11 miles away with no cell phone or number to call Robert.  Oh jeez...

I have a great sense of direction.  I have no fear going to new places.  I thrive on it.  But when I am on a road that all of a sudden becomes the Martin Luther King Highway and the ghetto appears I am beginning to think that, either Robert is very poor and lives in low income housing, or I am going in the wrong direction.

There are black men milling about the sidewalks.  They are listless.  They look hopeless.  They sit on stoops but they are not really talking much.  Do they have jobs?  It is obvious who the drug users are.  They have a vacant lost look and are sad.

How is it that these people are born into a life of hopelessness and I was lucky to be born into a life of opportunity.  Still, there are families with strollers coming through.  There are bustlers who are going somewhere important.  There are smiles on the faces of young people who think they have the whole world coming up.

I give up and call Bumpy.  She said it was a true comedy when she, Robert and Robert's son, Carson, figure out how to bring me in.  Robert wants to just come and get me as I describe where I am now.  I never stay still and have moved over to a different, safer place.  I am 15 minutes away they tell me, but I cannot find a number on the street for them to locate me by internet.  I say I am on Route 4.

I tell Robert I am fine.  I can drive myself there.  I stay on the phone for a few minutes.  I am looking for Route 17 North now but it's confusing so I take the left fork on the highway.

Egad!!  There is it - the entrance.  I am tired of driving around so I take a big risk.  I drive over the medium because I see it only has a small curb.  I wait.  Cars are blaring, but I am not in their way.  I am waiting for a break in the traffic so I can scoot over and get on the entrance.

I tell Robert what I am doing, how crazy this maneuver is, but I don't care.  I tell him I am hoping no policeman sees me.  Robert is quiet.

A break in the traffic...

                          - - - - - - - - - - - - - - -
Robert has a beautiful home in Ridgewood, New Jersey.  The decorating is really nice.  Everything is cozy.  Bumpy and I will share the guest room on the second floor.  Robert likes to play tennis and be in tournaments on the weekend.

What I notice the most is the stuffed hawk collection from their father.  He hunted and killed them all.  In today's world of wildlife protection, you cannot do this.  Raptor birds are protected from being slaughtered, except for those people who have special licenses.  Their dad had one of those licenses. 

Behind a huge glass case are many different raptors - let's see if I can remember all of them.  There was an osprey, a red-tailed hawk, harlan, cooper's hawk, an American Kestral pair (sparrow hawk) and a sharp-shinned...just about everything except a bald eagle.  Bumpy has the eagle (not a bald one) mounted and displayed at her home in Austin, Texas.

Bumpy's father has the same fascination with the raptor birds that I do, only he is from a different generation.  I would never kill one, ever.  I would do everything in my power to save one.  These birds didn't have a chance against Bumpy's father.

The Potters are proud of their Dad's artistic side but apparently, early on in his life, he gave up his creating inclinations.  He left behind a painting they all love and their Mom made a bazillion prints of it.  They could be sold on E-bay one day.

It's a painting of a hawk about to grab a bunny with its claws.  A few feet away is the rabbit's hole for escape.  The talons are just about at the bunny's back and the bunny is stretched out wide, mid-air, diving forward...

Bumpy says her Dad terrorized her.

"Dad, did the bunny make it?" she would ask.

"Of course not," he replied.

Sunday, May 29, 2011

"The Kayla" - Thursday, May 19, 2011 - "Kayla's 26th Birthday"

Kayla Quote:  "Finally my world has begun to change colors, I have things to do, jobs to run, people that care for me...classes, nannying, running Lia Sophia jewelry parties,sorority life and gaining new friends...one problem...my mind and body are still frozen in place...this new life is so close...I can feel its warmth...its rays beckoning me with the promise of normalcy..."  Kayla, 10/23/09, one month before her 3rd episode of extreme heart failure

Short Synopsis:  Today Kayla had trouble breathing.  The oxygen reading was 100% but her chest was tight and there was pain.  When she walks, she still has numbing pain in her left leg where they did the femoral artery repair.  Somehow, she still managed to have a good day.  She took two walks around the corridors.

The nurse informs us that Kayla needs more protein in her diet.  Her blood level reading shows 3.6 and it needs to be 4+.  She is listed as a 1a status, which is not the top listing.  She is not ready to receive a heart.  The doctors consider her too physically weak.  She would not survive the heart transplant surgery.  There are a few issues to resolve.

Even though her lungs are improving, she continues intravenous antiobiotic treatments for the residual pneumonia.  They say she may be released as early as 2 weeks and we are beginning to learn how to operate the PVAD machine.  It's pretty straight forward with several different power sources.  There are two batteries that slide into side pockets - each has 55 minutes of time on it.  These are the power source when she is walking around.  There is a plug which is used when she is stationery.  There is also a back-up machine, in case the first one fails and a machine for re-charging batteries.  You are given 8 batteries.

Kayla's lungs are a major issue.  She needs breathing treatments to help open up passageways.  She needs muco-mist which breaks up the flem in her lungs, but there is a product shortage so they have to mix it in exact proportions for each patient that needs it.  I watched horrified as my daughter had trouble breathing, as she had to wait hours for this special dose.  The nurse says they used to have ample supplies of it in the supply cabinet just 1.5 weeks ago.

I found out that they no longer give Kayla cyclosporine.  This was a complete shock to me.  The cyclosporine is the major immuno-suppression drug which keeps the body from rejecting the heart, which it considers foreign tissue.  Why wouldn't the body continue to reject the transplanted heart? I am told that the heart is so damaged that it no longer presents any threat.  It cannot be damaged any more.  It is just a vessel that the blood flows through from the action of the heart pump ventricular device machine.

This makes no sense to me but they know.  Obviously they tried it at some point in the past and discovered that the patients did not have to deal with rejection issues.  The best news is that Kayla's body will have a reprieve from the anti-rejection drugs until she receives a new heart.  Then they would start them again.  Ok, we will take anything positive here. Anything that gives her body any kind of break!

Long Story:  Bumpy and I take separate cars from Ridgefield and head to the hospital.  Tonight we are staying in Tarrytown and for the next several nights we will go to Robert, her brother's house.  Bumpy is following me in her car.  I by-pass the regular entrance to Route 684.  I have a mission in mind and wonder if Bumpy will figure out what I am up to.

We are headed down to Pat Banta's old house on Colonial Hill Road.  It was his first house with Tina where they started their family together.  It's where I first met their newborn baby Heather when she was just 3 days old.  The house is a sweet small colonial type up in a secluded area off this main road.  The access road up is all dirt, leading up to a handful of houses in the thick woods.  The quiet dead end is located next to two huge reservoirs inbetween Mount Kisco and Millwood, N.Y. 

I stop my car at the bottom of the hill and Bumpy is laughing, "You're going to Pat Banta's house, aren't you?"  I tell her to jump in to my car.

"I have no idea which one it is.  I have this image in my mind though.  I can find it, if they haven't changed it too much."  I say to her.

We drive up and see all the tucked in homes at the ends of long dirt driveways.  Not that one.  Nope, not that one.  We climb higher.  Higher.  The growth is thick all around.  Bumpy is apprehensive.  I just want a picture that we can send to Pat, I tell her.  I have memories there.  John Hall and I used to go and visit.  Pat would be splitting wood in the garage.  Pat would be making eggs with crunchy green peppers.  The new baby is born, Heather.  Pat's mom was proudly sitting in the cozy livingroom - all his family was there, happy.  Tina is beaming.  I was told I could go upstairs and see the sleeping 3-day-old beautiful new human.  I climb the stairs as they all have conversations below.  I creep in and it is dark but I get a very close look.  She was beautiful, so small, breathing.  She is perfect.  There was a bit of light coming in the window.  I can see her for a sweet minute...

We keep on driving up.

"That's it!  That one!"

"Are you sure?"

Bumpy is ready with her great camera.  She takes several pictures.  Click, click...

The house has different windows in the front that I don't remember,  like a green house.  Oddly, there is debris strewn all over the yard.  A weird sign says don't hit the cats, they are old.  A few fat chickens are running ahead of our bumper.  A couple old, skinny cats run and hide under rusty things left there, tires, pieces of old equipment.  The house needs paint.  We are trying to figure out if anyone is home.  No one appears to be.  It's getting creepy.

"Oh Jeessus, there is a car there.  Someone is here!"  Bumpy is scared and wants to leave immediately.

"This is wrong, Steph.  You don't go onto someone's property.  In Texas, they can shoot you dead.  They do shoot you dead!  They have every right!"

I try to hush her.  "I don't see anyone," I say as we scan and look.  This place is eerie now.

Out of nowhere, a discheveled white-haired woman appears and is at our car window, lickedly split.  Her eyes are big, wide.  It scares us.  Bumpy is sinking as deep as possible into her seat.  Gotta avoid that bullet!  We feel trapped.

I whisper seethingly to Bumpy, "Let me do the talking!"

What are we doing here, the woman demands.

"Hi, our friends Pat and Tina Banta used to live here like..over 30 years ago.  We just wanted to see the house again."

The woman instantly warms up and says to Bumpy.

"Oh yes, I bought it from Tina.  You know Tina?  Are you Tina?"  She looks directly at Bumpy, all smiles, but her eyes are strange and vacant.

Bumpy tries to talk but it is clear that she is nervous and she says, "No, I'm not Tina.  We are friends of Pat."  As we try to explain more, the woman becomes agitated and gets angry.  She backs up from the car, not giving us even the slightest chance to explain,

"Get out!  Get out of here now!"  She hisses at us.  She points her finger.  Bumpy tells me to get out of there now, now!  I turn around and drive out.  Am hoping she is not getting my license plate number.

"Did you see that?"  I ask Bumpy.

"What?"

"Her license plate - it said Pet Loss.  I wonder if she is in some kind of animal business.  She was not normal.  She was scary."  Her emotions moved too fast from friendly to angry.  She never gave us a chance at all.  No matter.  I got what I wanted.  The pictures for Pat.  It was obvious that crazy lady didn't realize Bumpy had taken them.

Bumpy pointed out that as long as we mentioned Tina, who comes from a famous family, we were fine.  After Bumpy wasn't Tina, it was over.

I continued, "Remind me to never take you sleuthing ever again."

                                                - - - - - - - - - - - - - - -

Bumpy and I brought some gifts with us to give Kayla.  We got her a white skirt, a black top and a brown patterned tank top.  All the clothes were picked with looseness in mind, since the canulars take up a lot of space and comfort is most important thing, yet Kayla likes to be stylish.  We also brought her favorite panini sandwich from Parma Deli, a capri - Italian bread toasted with tomatoes, mozarella cheese, basil leaves, sprinkled with balsamic vinegar.

The clothes were basically a flop.  Her friend Rachael laughed at our choices, but we had fun laughing too.  Back to the store we go to get credit and Kayla can have money to choose her own clothes.

Many came to be with Kayla on her birthday.  She received 3 different cakes.  The chocolate one was the best.  Those who showed up:  Adam Keller, Missy Main, Erika Robertson and her sister, Emily; Lauren Galanti, Rachael Finaldi, Rachel Pospisil, Bumpy, me, cousin Daryl and her husband Tom and her brother Thomas and Tom.

                                      - - - - - - - - - - - - - - - - - -

I visited the 5th floor cozy corner today.  It's so bare.  All my friends are gone.  Time to move out.  I leave the chalk board, the nice new box of many different colored chalks and the eraser.  There is half a jug of water left over from Mordechai's family and a half empty water bottle,  all sitting on the half wall.

I pick out pink chalk.

"I miss you Beth.  I can't pop in since they moved your mom to the other side of the ICU."

                              - - - - - - - - - - - - - - -
Pip is the new name for the baby red-tailed hawk.  They put the vote to the public with the top ten names suggested -  522 people voted for Pip, including me!  519 people voted for York, after New York City.  Pip is after the character Pip in the novel Great Expectations written by Charles Dickens.

According to Dr. Elizabeth Bunting of Cornell College of Veterinary Medicine, "a team of 6 experts was dispatched by the Departmet of Environmental Protection last Thursday to observe Violet at close range from the office of the president of New York University on the 12th floor of Bobst Libray.  They debated whether- and the best way - to remove Violet from the next and address an ill-fitting wildlife band on her right foot, ultimately concluding that the best path was to do nothing." - The New York Times 5/19/11

Yeah!

I go to the internet to check up on little Pip!  He's a definite plumper-nutter.  He is stretching his wings a lot.  All he does all day is eat, eat, eat and then practice stretching his wings!  He has a wonderful life!  Doting, devoted parents, food brought to him all day long, a comfy nest, a warm mother.

He is trying to figure it all out...

                                 - - - - - - - - -

The sun actually peaked out one bitty bit today before it vanished behind the clouds.

Bumpy and I head to Tarrytown for our overnight stay on the couches!

Sunday, May 22, 2011

"The Kayla" - Wednesday, May 18, 2011 - "Deirdre's 40th Birthday!"

Kayla Quote:  "I beat Dad!" - Kayla's remark regarding playing cards the night before with her father

Short Synopsis:  Kayla continues to take baby steps in the right direction.  She is happily connected to her huge data base of friends on Facebook, nearly 1,500 of them.  This is such a great avenue for her to be socially involved immediately with her peers.  For anyone who is sick often and in the hospital as a regular part of life, this is the best!

There are no changes at the moment in her care - only a big push to increase her calorie intake and get her physically active with walking.

Long Story:  Kayla gets happy when she beats Mike at the card games they play.  The two of them are such competitive animals!  Today was a happy social day for "the Kayla."  Her first cousin Ryan and his girlfriend, Stephanie, showed up for a nice long visit.  Ryan showed Kayla his computer images from his college animation courses.  He is working on a lot of drawing for short films of cartoons.  Kayla had her nose in the screen perusing the creative renderings.

Kayla also walked all around the hall in a big circle down one hallway and up the next one.  She is even pulling her own handle to her Thoratec PVAD heart pump console.

                                - - - - - - - - - - - - - - - - 

Bumpy spent the night in Kayla's room at our Ridgefield home.  She and I had a nice relaxed morning doing errands.  I put three of Kayla's checks in the bank for her.  She is now receiving disability from the government.  We went to Stop & Shop to get some Nair and dry cat food. 

Bumpy has learned that if you are staying in Kayla's room, you must fill up the bowl by the dresser with dry cat food.  Aww...yes, listen to the cats crunch and eat the dry food...especially in the middle of the night.  Kayla's habit for several years now.  The cats have made her room bowl their favorite place to eat.  I teasingly admonish Bumpy if the bowl is empty, but this morning there was no more dry food in the entire house!


When we get to the hospital, Kayla informs us that she now has over 140 responses to her first "status" on Facebook.  She has become a local celebrity and an inspiration for everyone in the area.  My blog is reaching out to the world and is being hit upon from all sorts of countries.  Early on it was Thailand and the Phillipines,  soon to be followed by Canada, Germany, Italy, England, Saudi Arabia, Singapore and a few other countries.  Australia came up for the very first time the other day.  No one in South America yet, but maybe soon.

There have been nearly 3,500 hits in a month's time.  The internet is the way to go for a story unfolding day by day.  Each day there are between 75-100 readers.  When the blog site goes down for maintenance problems  (down once for 2 days) the readers kept on clicking in to read.  I need people to become "followers" to increase the clout of the blog so that we can get more awareness going regarding organ donation.  We will save lives and we need to get a heart for Kayla!

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Rain, rain, rain!  It just won't stop these last few weeks.  Bumpy and I have these grand plans to walk the bridge for exercise and it cannot happen in a downpour.  We are now willing to walk in a little rain - we could bring our umbrellas but it's nothing but downpours!


On the way to NYC, Arnold leaves a message on my cell phone.  I have not spoken to him since his wife died.  I call and leave a detailed message back letting him know how each of the families are doing.


When Bumpy and I get up to Kayla's ward, we realize that we have forgotten her fruit smoothie that we purchased at King Smoothie on the drive down.  Her favorite is called "Angel Food."  It's a strawberry-banana one.  Anyone who knows Kayla knows that she practically lives on smoothies.  The smoothie was left on top of the car on top of the parking garage.  Kayla is aghast.  She is a germophobe and she worries that people tamper with things.


I go to get it.  In the lobby is Lydia, the one I gave my broken jewelry piece to fix.  Her husband is there too with his walker.  They come to the hospital quite often for check-ups for his heart.  He has to see many doctors.  Lydia is close to Mordechai and always asks about his mother.  I tell her that I check on Mordechai's mom and send emails to both brothers detailing what I see.


I bring the smoothie upstairs.  Bumpy and I convince Kayla to try it, but first she tells us to take off the top of the drink.  This satisfies her and she enjoys the rest.  After a short visit, Bumpy and I go out in the torrential rain for lunch at Jou Jous.  We get soaked under the little umbrella which we have to share in the whipping winds.  The umbrella flips up and nearly breaks. 

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I go to the elevator to go down.  It takes a long time always for the elevator to come.  Dr. Naka comes out of nowhere to wait for the elevator too.  There is a young woman who was just in the bathroom with me.  I noticed her great fitness in her tiny tight body.  Her beauty compels you to look at her.  She walks by with purpose.  Dr. Naka takes a quiet look also, a sneak peek that no one is supposed to notice.  A top surgeon in the world and he is like me - he notices the perfection in her beauty.

He is often alone.  I see him all over the hospital walking in a stealthy way.  He emotes a soft intelligence, but acts like an undercover agent.  He does not like to be near a lot of people.  The elevator comes, but it has too many people in it.  He does what I often do.  He takes a quick scan of the other elevators to see if any of them are opening.  That way you can jump into a more empty one as the bulk of the people walk like sheep into the first one.



He looks disappointed to see no other doors opening, gives up and comes in.  He is in front of me.  I am amazed to be near the aura of what I consider to be one of the most incredible people on this earth.  He saves hundreds of lives every year with his surgeon's hands.   

His name tag is slightly covered on his white jacket but I know who he is.  He covers his lapel with his raised hand and he waits on the ride.  He is clearly unhappy by the crowded small enclosure.  I don't like it much either.  When the elevator opens on the bottom floor, he walks out with big strides.  Then he disappears around the corner and into a door where no one else is allowed to go...


                                 - - - - - - - - - - - - - - - - - - - - 


The baby hawk is growing fast.  He looks like a fat little bald chicken, the kind you buy in the super market covered in cellophane.  His beak is sharp and curved downward, the tell tale sign of a raptor.  He dwarfs the dead eggs that he shares the nest with.  He stretches his wings out a lot.  They are the biggest part of his body but they are still fuzzy...


                               - - - - - - - - - - - - - - - - - - - 

 
A woman took over Dovid's chair.  She slept in it the night before in her clothes and she stares blankly at me.  She looks tired.  My chair, that was at the back of the cubby, facing out from the wall, has been taken out completely.  The corner looks bare now.  The white table still has a box of matzah crackers.  Aaron's shelled almonds and a metal cracker tool are there.  A cup which holds plastic silverware is also there, next to some cheap brown napkins from the cafeteria and a package or two of salt and pepper.  A bottle of wine sits in the corner on the floor in a brightly colored bag next to an opened jug of iced tea.  A big jug of extra water is on the other white table along with the Hebrew bible.  There is an empty box of blue tissues, which no one has bothered to throw away even though they used up the contents.  There are only a few people in the entire room as it is early morning when it is generally empty, before the crowds come in to wait for surgeries to end.  I sit for a few minutes and write a message on the chalkboard for Beth. "Kayla is up on the 7th floor..."


                        - - - - - - - - - - - - - - - - - - - -

Bumpy and I decide to go past Tarrytown.  It is Deirdre's actual birthday after all.  We find that she is not home but downtown getting a birthday drink at Brutes, a new bar that was not there when we grew up.  The place is nice and empty with only Deirdre's crowd, maybe around 10 people.  Bumpy and I get a black Russian and a white Russian.  We are still searching for that delicious taste that we had from Tucson cousin Chrissy's homemade kalua.  Hers was the best - we've never had better!

Deirdre is having a great time, floating from one friend to the next, enjoying her special day.  I watch her and realize she has never looked more beautiful.  Her hair is perfect and she is wearing something brighter and more colorful than her drab work out clothes, the ones she wear to exercise in, the ones she wears to perform on second base for her town baseball team.

I strike up a great conversation with a young 40-somethng gal who is one of Deirdre's friends.  She says she is one day older than Deirdre and she is the eldest of 6, never married, no kids.  She says she enjoyed helping raise her younger siblings.  She says her name is Sabrina but that her mother named her the dumb middle name of "Meadow."

"I love that name, Meadow," I tell her.

"It's taken me a long time but yes, finally, I like it too," she replies.

"It's beautiful," I add.  Sabrina tells me that her mother was from the hippie generation from the 60s and that she was married in a field and that well, Meadow...  I am looking closely at this girl now.

"Who was your mother?"  I then catch a glimpse of her profile and I've seen this profile before.

"Arlene Fiorelli."

"Are you kidding me?  I went to school with your mom and at our 10th high school reunion, when none of us were even married, your mom came along and said she had 6 kids!"

"That's her..."


 







 

"The Kayla" - Tuesday, May 17, 2011 - "Back on Face Book!"

Kayla Quote:  "I can't remember my password."  Kayla lamenting about how she has forgotten her password for Facebook

Short Synopsis:  Today was another amazing day, truly!  They took out Kayla's feeding tube and it left a bump on her nose.  Am glad she does not have a mirror because that would have bothered her.  It will take a few weeks for the indent to disappear.  When you begin to eat again, it's small bites and then more small bits a few hours later.  She has to eat more and she's is game.  She can walk to the end of her unit and back with her new device luggage device with handle pulled alongside.   It's the vital engine that drives the motor that pushes the blood through her body.

In the afternoon, she has trouble breathing so they are troubleshooting and thinking about how to address this.  She has tremendous pain at her VAD site where the four large one inch tubes lead into her body just above her stomach.  There is frequent changings of this dressing to keep the area clean.  When they give her pain medication, she takes a nap and escapes the pain.

The hardest part of the day was when Kayla cried. Kayla is not a cryer.  She never has been one to cry so when she does, it's serious.  Big tears were dropping down her cheeks.  Today was the first day she learned that she has to have this luggage console.  She thought she would have a device that she could strap to her midldle and walk around with, not a big piece to lug.

Mike and I knew she needed the bigger device and I told her it was because she had suffered damage to both her right and left ventricles of her heart, not just her left side.  Her cardiac arrest was much more serious - at least she had life.  She was miserable because she wants to be able to go and see her friends in different places at any time.  She wanted to wear big loose clothing to hide the device so she could lead a somewhat normal life.

"I will drive you anywhere you want to go! We will figure it out," I told her.  What we need now is a new heart.  That will get her the freedom she is seeking...

Long Story:  When I woke up off the couch in Tarrytown and looked out the window, there was a river of water flowing down Cobb Lane, a big brown stream.  Dad was standing next to me. 

"The Saw Mill Parkway is going to be closed.  If there is that river is flowing down Cobb Lane, it is definitely going to be closed!"  Dad agreed with that!

Blue loves to come and sleep with me on the couch at night but he nevers stays for long.  He goes through this elaborate routine of rubbing your face, breathing and purring into your nostrils and nipping your hands as you pet him.  He then flops his warm furry body into your side.  He loves to be stroked but then as fast as he settles in, he gets up and is gone.

In the morning, he has another routine of jumping up on the back of the couch and looking out the window down at the back yard.  The Hudson River is in the far distance but he is looking at the squirrels and chipmunks and reacting with a flitting tail.  I now sleep in the other corner of the couch ever since I came in the other night and Ty and Deirdre had taken up the other two spots.  I like the new area - I like change.

Today is special in one more way.  My dearest childhood friend, Bumpy, is now in the area.  She has driven all the way from Austin, Texas to come back to the Northeast for a month.  She will be visiting many in her family and her sister, Anne, has flown in from Kenya, her home for the last 30 years.  This morning Bumpy will be coming over the Hudson River, across the Tappan Zee Bridge, from Robert her brother's home in Ridgewood, New Jersey.  We will then drive down to the hospital together.

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Mordechai and Dovid:


I have visited your Mom over the last two days.  She looks very sweet with the new hairstyle - they washed her hair and put it in a side ponytail that is curly.  She looks better to me.  Her hands are less swollen than before.  She responds when I speak about her sons -- I am not kidding!  But she does not open her eyes.

All her numbers look good.  She is off the vent for 2 days now.  Only strange thing is her heart rate went from the 70s down to 54 - ask about that?  Also, ask that she get physical therapy so she does not just lay there.  :)  She also responds when I touch her feet - I tell her that she is ticklish.  I always rub her arms, face and hair.  I believe the touch is important.  This last time Maria from the reception desk went in to see her with me.

You can read all about Kayla in the blog.  She is doing great - really great!  We are now up on the 7th floor where she has an incredible view of the river and bridge.  She is walking and eating.

I am no longer lonely - my best girlfriend flew in from Austin and will spend a week or so with me.  My sister Deirdre turns 40 tomorrow and Kayla turns 26 on Thursday - so we have fun birthdays coming.  My sister Valerie is having a special dinner on Saturday for Deirdre.

Hope all is well with both of your families.  I want to see a picture of your daughter in the beautiful skirt and if she gets bored with that skirt, let Mordechai's daughter enjoy it!

Regards,
Stephanie

From:  Sarah
Sent: Tue, May 17, 2011 10:56:35 AM
Subject:  Gunther, Ann and Sarah

Hi Stephanie,
I am sorry, it got a little crazy yesterday with mom's transfer to Burke.
At first they weren't sure if it was a go or not and then all of a sudden it was and the ambulance was there.  I was going to ride in the ambulance with her so I didn't get to say goodbye.  I am going to miss our gang and so appreciate all the support and understanding and kindness, as well as the inside scoop on the hospital goings on.  I hope that all goes well with Kayla.  My sister and I are followers on your blog now, so we'll be able to see how she is doing.  Please say goodbye to Beth.  I don't have her email and tell her I am pulling for her mother.  I also am sending you both hugs and hope we can stay in touch.  My dad sends his regards as well.
Love,
Sarah

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At the hospital, Kayla apparently took matters into her own hands and began to walk out in the hallway with her physical therapist as she scooped her new surroundings to find a room to move in to.  She saw a dirty single that was empty and asked about it.  Someone else got that one first but when a new one was available they would be sure to give it to her!  Kayla takes care of herself!

Mike came to visit "the muffin" in the evening.  When she gets a good nap, Kayla gets wonderful time in the evening, her best biological time of the day...nightowl that she is.  She and Mike enjoy playing cards or games like UNO.  It's special bonding time for the two of them.  This evening Mike was excited to tell me by phone that Kayla is officially back on Facebook!

I haven't been on FB in a month & 1/2 due to heart failure, 5 surgeries & a coma.. currently in my 7th week in the hospital..slowly but surely making progress..Thank u sooo much to every1 who sent me luv especially those who fundraised & visited me..I can't even put into words how much ur support means to me.. You give me strength & have been my rock through one of the toughest times of my life.. Love u all ♥

In less than 20 minutes, Kayla got 40 responses from her post...

Saturday, May 21, 2011

"The Kayla" - Monday, May 16, 2011 - "Moving Day"

Kayla quote:  "Mom, where are u?" - Typical text from Kayla to her mom, regarding her whereabouts.  Stephanie cannot keep still...

Short Synopsis:  Things are progressing incredibly well.  Each time one visits Kayla, it seems there is a momentous step forward.  They take away another medicine box.  They make her walk further.  She is allowed to eat more foods.  Today's forward motion?  She moves out of the intensive care unit!  Wowzers!

After 46 days, Kayla has been approved to move out of the intensive care unit!  This is truly an incredible thing!  Kayla had her nurse call me as I was taking a breather in the cozy corner.  The reception phones rings and they call out "Trolle family."  I am always nervous when a call comes through, afraid it might be some bad news.

The nurse asks if I want to come in and pack Kayla up.  They have a bed for her on the 7th floor in the step-down unit.  It's got a view of the Hudson River.  There are four beds in this ward room.  The patients are inbetween with their need for care, not quite intensive, yet not ready for the floor.  There are three levels of care in hospitals - intensive, step-down and regular floor. 

This is a special floor for VAD patients.  All of the nurses are specialized and know how to handle all situations with the devices that keep hearts pumping.  More and more patients are able to live with ventricular assist devices.  It used to be that they were used only for a few months as bridges to heart transplant.   Elder patients, who are too old for the coveted donor hearts (which they save for the younger ones) are using them as "destination devices."  They can walk around for years with them.

The first thing I notice up on this floor is a sweet grandfatherly type, cute as could be, white hair sticking straight up.  He is happily walking around with a pouch strapped to his middle.  I know this is a left ventricular device and he looks wonderful and he is smiling! 

He is someone's grandfather whose death day was postponed.  He has a new lease on life and he can be someone's father, someone's husband, someone's grandfather for years more.  He is dancing, not walking, his step is light and jovial.  I bet he will be released soon to go home.

I tape up Kayla's news clipping and pictures on her wall.  I set up her framed photos on the grated metal heater below the window.  I place her lotions and special toiletries on her new tray table, her fake and real flowers in key spots, her balloons are afixed to her bedside railing.

Long Story:  It continues to rain all the time, for days now.  No one knows what the sun looks like, but everything is green, green, green like a jungle.  I wake up off the couch in Tarrytown and help Deirdre as she has to get going earlier than usual.  I rouse Cole.  He is disabled, very sweet, a special treasured child in the family.  At the age of 10, he crawls to be with you wherever you are, in whatever room you are in.  He cannot speak. 

Cole has the best temperment.  He wakes up slowly and looks at me with a little trepidation in his eyes.  He is legally blind but his vision has improved over the last few years.  I pick him up, change his diaper, dress him.  He laughs and loves this routine.  I comb his black hair, which he does not like.  I walk him down the hallway, holding him under his armpits.  His body is long and thn.  He walks stiffly, but enjoys this routine as well.  He knows what to do - one step in front of the other.  He calls out with delight.  I strap him carefully in his special eating chair and he waits for his milk in a sippy cup.  Deirdre has put out his cereal with milk.  I spoon feed him his Cheerios.

At 7:15 Ty helps me get him into his special wheel chair to walk him out to his bus, which has stopped at the top of the driveway.  There are two women who greet him and we roll him onto the special platform which mechanically lifts him up into the bus.  He kicks his feet out and reacts with more laughter.  The first time I saw this years before, I cried.  I was touched that the workers were full of love for a child who had such limitations in this world.

Back into the house to get Talon to his bus stop, which comes at 7:39 and is down the street.  Talon announces to me that he doesn't get dressed until 7:20, that is his regular routine.  He relaxes in the morning before school and has breakfast sometimes with Grandpa.  Grandpa always sets up his empty bowl on a placemat for him at the ready.  Cartoons are a favorite beginning to his day.  Today he speeds up his routine, maybe because his mother is not taking him and he's worried if Aunt Stephanie knows what to do. 

Deirdre and her husband, Ty, work hard all day long.  You have to in order to pay your bills.  Their taxes alone for the house are over $20,000 per year.  I can't imagine how anyone has any money to do anything, like feed one's family.  Westchester County taxes are ridiculous - Connecticut is a little better. 

I do three loads of laundry to help them out.  Deirdre has her long hours of work.  Then she comes home to take care of her children.  My mom makes a great meal for everyone.  How does Deirdre have any energy left over to do laundry?  I love folding clean clothes.  It is satisfying for me.  Not everyone enjoys doing laundry.

Today the rain pelts down.  I am ready to go to the hospital and Talon gets into my car.  We get to the bus stop and have lots of time to wait.  We have fun watching all the 30 second cat videos I have stored on my cell phone.  Talon is laughing at every one.  Blue, Rheu, Moo-Moo kitty and Babeee all do their antics and entertain.

The yellow bus pulls up.  Talon gets nervous and rushes out of the car.  I tell him that he doesn't have to be so nervous as he has plenty of time but he is his own person.  There is a boy who is running out of a car and who gets soaked as he jumps up the bus steps.

No wonder America's kids are all overweight.  There are four cars and one truck dispensing kids to get up onto this bus.  No one walks to bus stops anymore.  Are we all really that afraid of letting our kids go to bus stops?

My mother let us be free when I was a child and I am glad she did.  No crazy person came to kill us.  We survived just fine.  In fact, we developed skills to keep us surviving.  We knew if someone was weird and we ran away!

I even remember going to high school one day in my nice clothes in the pouring rain.  Cynthia and I had a path through the woods down the hill which came out right behind the high school.  We even enjoyed races down that path, pushing each other out of the way as we competed to be first.  Our house is up on the hill and the high school is down at the bottom. 

I was always late running down that dirt path.  One time it was pure mud and I fell big time.  My entire side and clothes were covered in mud, thick mud all the way from my shoe up to my shoulder.

Miss Dawson yelled at me when I came in late.  This time I had an an excuse - "I fell in the mud!"  She had some startled expression on her face!  And I had no tardy on my record that day!  Ha! 

Kids learned how to be self-sufficient back in our day.  Now they all seem to stay indoors, watching TV, doing video games.  Going outside and meandering in the neighborhood is not typical in a lot of places. 

It is 7:40 now and the cars are taking turns to follow behind the bus.  Everyone is on their way to work.  I drive to the Saw Mill Parkway.  It takes over an hour to get to the hospital.  Traffico!

I am happy to see "the Kayla" in her new surroundings.  She can see the outside for the first time in over a month.  The water shimmers on the river.  The long barges are being pushed down river by the spiffy little tug boats.

Kayla is not happy though.  She tells me she has asked to go out on the floor, that she does not like hearing every one's alarm bells, that she feels uncomfortable with men in beds nearby.

I just hope she gets a river view again...

Thursday, May 19, 2011

"The Kayla" - Sunday, May 15, 2011 - "Sunday Brunch"

Kayla Quote:  "It's starting to get really tough for me to breathe, but if I make it to 6 a.m., it will be 24 hours...I'm exhausted though..." Kayla wrote this on her clipboard

Short Synopsis:  Kayla has been off the ventilator now for 2 days.  This is tremendous progress.  They try to push her to improve her breathing but there are often plugs in her airway.  She needs suction a few times a day to help.  Certain times of the day, she has trouble breathing.

None of the doctors or nurses are perturbed by any of this. Kayla's monitor numbers are perfect.  Her oxygen saturation is 100% so there is no problem.  There is still some residual pneumonia but all is going in a positive direction.

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Long Story:  I look forward to the Tarrytown Sunday brunch, which I don't make very often.  Years ago, families would have a special Sunday meal together - the whole extended family. Mom taught us that this was how you kept families together.  They would all go to church and then meet at someone's house and have a big meal.  Mom loved her Sunday meals when she was a child growing up in Providence, Rhode Island.


Ty, Deirdre's husband, has become the family chef for Sunday brunches.  I have been hearing about these gatherings.  My sister Valerie comes every Sunday from Norwalk.  This morning, I decided to stay and afterwards, my two sisters, Valerie and Deirdre, were going to drive down with me to NYC to see Kayla in the hospital.


Deirdre is quite buff these days.  My original family is very much into sports for physical fitness.  I grew up with swimming, diving and tennis.  In high school I was on basketball and volleyball teams.  In college I was competing in diving and lacrosse.  As an adult, I branched out into triathlons and continued to do volleyball, basketball, slalom water skiing, wind surfing, kayaking...just about anything was fun to try.  Older now, I still do small triathlons, swimming and loads of walking...but the Doo-Dah (my nickname for Deirdre) is the true family athlete.


In high school, she walked away with all kinds of physical fitness trophies.  Nearly 40, she is not giving up her fitness.  She plays second base on a town co-ed softball team.  I watch her as she leaves to go to a spinning class at a nearby gym.  Her muscles are tight and strong.  

I am a little disappointed that I continue to barely train for my upcoming triathlon, which is only a few weeks away.  The only way I can train is to climb the back steps in the hospital behind the elevators.  Now I climb to the seventh floor.  My legs feel it and it helps but it is not the long distance biking which I should be doing.  I will never get in the 10-12 fourteen mile bike training runs I need before June 5th.  My daughter's life and care are more important now than this training, so that's that.

Deirdre leaves and Ty begins to prepare for the family brunch.  I watch as he takes a load of potatoes, washed them and then scraps off the skins.  He is paring strips of potato for the family favorite - hash browns.  He looks around and discovers he needs more ingredients as there are more showing up this morning for the 11:30 meal.


He enlists me to text Deirdre for the needed additions from the food store:


Deirdre:  I'm headed home now    10:56 a.m.


Stephanie:  Get bread says Ty   10:57 a.m.


Stephanie:  Ty needs eggs too!   11:06 a.m.


Deirdre:  OK       11:08 p.m.


Stephanie:  Also need syrup     11:10 a.m.


Deirdre:  Right   11:11 a.m.


Stephanie:  Just buy up the whole store!    11:11 a.m.


Deirdre:  LOL!    11:12 a.m.


Dad is now involved.  He is standing at the edge of the living room telling me all the additional items he wants.  He sees the texting system is a great way to communicate.  He does not hesitate to add that there was a small grocery list left on the counter and he wonders if Deirdre saw it on her way out the door.

Stephanie:  Orange juice also! :)  We r super hungry.   11:12 a.m.


Deirdre:  :)


Stephanie:  Lactoid milk - Grandpa is demanding c u in a few hours after u find all this stuff.  
                     11:13 a.m.


We are all cracking up thinking about Deirdre running around the store looking for more items as we keep texting what we need.


It's the most incredible meal, hosted by our gracious cook Ty!  Everyone gets a fried egg or two.  There is bacon, hash browns, all kinds of toast, orange juice, coffee - a good old fashioned meal from the old days.  We enjoy great conversation and laughter.  Grandma is not with us.  She is roaming around Buffalo and Syracuse with a bunch of 80-something women, all competing in a bowling tournament.  She scores over 200 regularly as she has been bowling all her life.


Deirdre and Valerie climb into Kayla's red Honda with me.  Kayla's new ICU room is so spacious and wonderful.  There is a fabulous guest chair that you can push back into a semi-reclining position.  I often take 2 hour naps in it next to the napping Kayla!  Deirdre is exhausted from her hard week at work.  The landscaping business is incredibly busy in the Spring.  She is drawing landscape plans like crazy now.


Kayla needs a nap because at 11:30 each day she gets physical therapy and tires from it.  After that, she frequently takes a nap.  Kayla feels guilty and was falling asleep, but I encourage her to do so - it's great for her healing process.  We then encourage Deirdre to sleep next to her in that grand chair.   Valerie sits next to Kayla on the other side and holds her hand.  


I go out for a coffee...
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On Saturday, May 14, 2011, 7:32  p.m.


Stephanie wrote:


Yes, we are still looking into hypnotism - trying to find someone qualified and not hocus pocus.


Amazingly, after having some troubling days, Roz (Steven and Beth's mom) is rallying again.  She surprises everyone.  They are having end of life discussion with her regarding her kidneys.  If her kidneys do not rally, Steve says it is over.  They cannot give long term dialysis to VAD patients and have a reasonable quality of life.  I guess it would mean going three times a week, 5 hours a day, to a facility that is very far away in New Jersey.  Beth is very upset about everything.  Steve is driving back to D.C.  but will be back in one week.


Our cozy corner is very lonely and empty.  Everyone is clearing out.  Have to invite new people in.  People are even nabbing the blankets, right off the chair! Right in front of me!


We miss our Cohen guys!  Hope all is well with you.


Regards,
Stephanie


P.S.  I had a really wonderful time this morning, working 3 hours with my son on splitting logs.  We work well together and it felt like a normal life again.  I ran around and did errands. Wonderful feeling all around.


On Sat, 5/14/11, 10:41 p.m., Mordechai wrote:


Sorry you are so lonely,
I just phoned in and was told that while my mom was off the respirator for 12 hours, she also had regular dialysis.
When they come around and tell us ok, we'll do the surgery.
Let's keep hearing all around good news
All the best,
Mordechai

 
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I go and visit Judith Cohen, Mordechai and Dovid's mother again.  Her heart rate is 54.  Her oxygen saturation is 100%  Her blood pressure is 125/54.  She is off the vent - great!  They have washed her hair and it's in a sweet side ponytail.  I stroke her hair, arm, hands and feet.  You can tell she likes listening to conversation.  I continue to tell her about things, the weather, is she comfortable, etc...

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I see Gunther and his daughter, Sarah.  These are the most enjoyable new people in our corner.  Gunther is happy that his wife is in the step down unit and will be moved soon to a rehab facility.   They are following the hawk livestream cam, along with nearly 5,000 others.

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I have decided to go and see the red-tailed hawk's nest in Washington Square!

Ross has invited me to come down and have a drink at his friend Matt's new apartment on 34th Street.  I buy a $10.00 metro card and head down.  Walter is recovering well from open heart surgery.  They are the most wonderful new New York City friends.

The street life is full of excitement, even in the middle of all the downpours.  I have my crappy umbrella but it works great to keep me dry.  I carry my notebook computer in its special case that hangs like a book bag from my shoulder.  I should have brought the new bottle of wine that I bought with me.  It  is just sitting in the cozy corner behind the recliner.  It's surprising that no one steals it.  It's been there for days but there is no one to share it with.

The apartment is on a high floor and  has no furniture in it yet, but it has inlaid wood floors, a sweet bedroom, a great bathroom, small functional kitchen and nice living room with two windows overlooking the streets below.  Matt's refrigerator has only cheese and champagne in it.  He has one chair in the middle of the living room and a TV.  Open space makes you feel free.

I stay for one hour for the cocktail hour, but I am on my way to see the hawk's nest.  Ross has this idea that I could walk a half hour down to it but I have little time.  It is going to get dark soon the choice is the subway.

When I arrive I get a sandwich and head to the park.  I see a tall building and search for the nest.  From the hawk cam, one can see the Washington Square arch in the lower left corner in the background.  I try to situate this and...

There is it!  One building looks like a military fortress, a large imposing red brick building that dwarfs all the surrounding buildings.  It has a powerful appeal.  Up high at the twelth story are tucked in rectagular nooks.  The architects for this building had no idea they were designing the perfect perch for hawks.  It is obvious the birds of prey can survey their kingdom all around from this place, especially the greenery in the park below where lots of live rodent type creatures reside.

I am looking up at the top of the Bobst Library, one of New York University's newer buildings.  The second recessed rectangular space from the right is where they live.  There are sticks hanging out from it and I see a hawk, like a sentry, stone still up there, looking out.

My first thought as I look all around is - it must be so hard to get food!  You realize how much effort goes into getting food.  There are no rats visible and only a squirrel or two about.  One of the adult hawks soars out and down.

The people who are walking everywhere - tourists who take lots of pictures, children playing and shouting on a playground, students resting on benches...no one knows the hawks are up there!

I sit with my sandwich next to the center fountain of water.  I eat and watch everything.  Over the next half hour, only two people are peering up as they walk through.  They know!

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I have no car to drive myself back to Tarrytown.  Mike was supposed to come and see Kayla but she tells him not to come for a few days.  She schedules him for Friday night.  She has plenty of company.  My sisters have driven the car back to Tarrytown.
I decide to take the train.  First the subway to Grand Central Station.  When you get to 42nd Street, you have to take a shuttle to Grand Central.  It is getting late and there are fewer trains going out of the city due to budget cuts.

Deirdre has agreed to pick me up at the station when I get in - just need to text her.

I see an attractive group of ladies who are all dressed up.

"Do you know how to get to Grand Central Station from here?"

One gal, elegantly dressed in black, hair perfect, great shoes...she is going in that direction, she says, so I can join them.

"Why are you all dressed up?"

Shira is a journalism student, near my age.  She is graduating with a journalism degree from Columbia University.  They are coming back from a graduation party boating trip around Manhattan Island.

We strike up a conversation...