"The Kayla" - Wednesday, June 8, 2011 - "More on the Pipster"

Kayla Quote:  "I don't want to die in pain Mom.  I don't want to die a long slow death."
                                                                                   Kayla in the afternoon

Short Synopsis:  There are endless details to go over as we get ready to leave the hospital sometime soon but not exactly sure when.  We spend a lot of time watching "Pip" on the video cam and also looking out the window at the beautiful slow moving Hudson River.  Pip is near fledging.  Thousands of watchers are excitedly viewing his progress.  Others are in the chat rooms learning about red-tailed hawks and talking about sweet Pip.  When will he go??!  At the hospital, there are watchers too....watchers who are charting Kayla's progress as she gets ready to be sprung!

Long Story: Violet's behavior is changing as Pip grows.  Pip spent the first night alone in the nest.  He is getting stronger and rougher so it's not a bad idea for the parent bird to stay away.  Pip is practicing hunting skills and all he wants to do is eat and the parents have a hard time keeping enough food in the nest for him.  He needs to fly out soon.

It is 9:13 a.m. and I log into the chat room.  The expert is there.  Everyone grows quiet when our teacher arrives to instruct us regarding red-tailed hawks.  He is one of the world's leading authorities on this particular prey bird.  We are awestruck.  It is palatable how quiet it is in what has become a natural internet classroom.  I envision several hundred people reading, learning and questioning.

John Blakeman:  "If Pip survives (20% chance in first year) he will begin to mate (pair bond, not copulate) in the third year.  For now, he won't fledge until hard quilled - all blood out of his feather quills."

Pip is calling for breakfast.  Persistently!

J.B.: "The vocalizations are telling the mother he is hungry.  Pip will learn to hunt after he fledges.  His talons look menacing but are still soft.  In a week, the nails will change."

They pair bond in December and copulate in January.  They have their young in March.

J.B.:  "Not important finding a good mate.  It is much more important to find a good territory with lots of prey." (Aside: such as Washington Square where Pip is with all those rats! And pigeons too!  And the occasional squirrel!)

J.B.: "Having territory and keeping it."  (Aside:  Only way to survive.  Most red-tails do not mate or have families.  They just have lives.)

J.B.:  "Pip is always on the ledge in every respect but won't fall off."  (Aside:  It's a 120 foot plunge.)  "They digest bones but not fur."

J.B.:  "20% - after that survival goes up nicely each year.  As they live longer - they will live even longer."

J.B.:  "Pip is perfecting his eyesight in the next 2 weeks.  He will spend a lot of time looking out into the park."

Shake Your Tail Feathers:  "Will someone be able to ID Pip in the future?"

J.B.: "IDing Pip will probably be difficult unless he has some unique feather patterns."

More questions from the forum.

J.B.: "Ledge nests easier to build than tree nests, far fewer sticks."

Shake Your Tail Feather:  "Million dollar view.  Best real estate in NYC.  Red-tailed hawk nests."

J.B.: "Not the view for RTs, it's the prey base nearby, in this case, rats.  Red-tails don't lose weight after fledging."

Thyrdrail: (entering the chat room) "Who is John Blakeman?"

Birdy12: "John Blakeman is a hawk expert."

J.B.: "I am an RT expert."

J.B.:  "Pale Male (Aside: Long surviving male red-tailed hawk in mid-town Manhattan with nest on top of great piece of real estate - has lived there for years and through many mates who died) drops off tall buildings, sets his sights on one pidgeon in the group, goes 120 mph and the poor pigeon!"

It is 10 a.m. and Bobby flys in with a small rat.  Geez...this will not be enough.

(JB is taking a 15 minute break - He's back again.)

J.B.: "Pip is getting aggressive. 'Gimme that Mom!' "

Violet drags the rat across the nest.  Then Pip drags the rat across the nest.

J.B.:  "Sooner or later Pip is going to lash out and grab Violet.  Violet will then just drop off the food and fly off."

The small rat is for both of them.  Violet tears off bits for Pip.

J.B.: "Notice the quickness of Pip's head in grabbing tidbits.  His nerves are starting to mature."

J.B.:  "Pip is still sitting back on his tarsi, ankles.  Next week, not so.  I am guessing that Pip is now 700-800 grams.  Violet is probably 1,300 grams.  Let's face it.  Dining with RTs isn't elegant although it's efficient." (Aside: Pip is greedy!)

J.B.: "Violet does eat on her own, but mostly away from the nest."

Questions regarding bathroom behavior.

J.B.: "Slices not squirts for going to the bathroom.  Lift tail and slice away from nest."

J.B.: "Bobby isn't seen much because he's out there hunting for the whole family.  He's the Great Provider."

J.B.: "Pip's tail is now 25% down."

There's a movie - "Nature Pale Male" in case you are interested.

Shake Your Tail Feather: "Where will Pip hang out after fledging?"

J.B.: "Washington Square Park for the summer."  Nice.  Among all the New York University students and near the Bobst Library, where his parents have nested atop.

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

It is 95 degrees out today.  The hot weather is making everyone listless.  In the front foyer to the hospital, security took down a big black man.  Blood was on the floor by his mouth.  At first it looked like he was having heat stroke but he was bellowing.  Then there were 3 policemen on top of him.  Big city atmosphere here.  Security doing their job.  Wonder what he did to deserve this treatment.

                                   - - - - - - - - - - -

I spoke with Dr. Kent, the addiction psychiatrist.  I told her that Kayla talked about going to the beach, a favorite place of hers but that she would be too embarrassed with people seeing her with this machine pumping and making loud whooshing noises.  Kayla says the machine looks like a bomb strapped to her ready to go off.

The doctor said Kayla will gain confidence and go out more as she gets comfortable.  We can take small adventures together.  I tell Kayla I will take her anywhere she wants to go.

                                 - - - - - - - - - - -

Marva, the Medicare Home Health Aide, has been very helpful.  She can get us 4 hours a day for one month with a helper so I can get breaks to go out and grocery shop, exercise, etc..  After that they taper to a few hours a week, then nothing.  Sounds like a decent plan to me.  It will get us started.

                               - - - - - - - - - - -

When I saw Kayla she was full of negative thinking and probably in immense pain.  She was not listening and then she grew anxious.  She wanted Lorazepam.

The nurse said, "What else can you do?  How about a wet wash cloth for your forehead?"  Ice chips to chew.  Lidocaine patches for her back.  Yes!  All of this is working well but then someone brought in the pill, which she took.  Kayla got sleepy.  Maybe we could have held back that pill but it was given anyway.  She is napping now.  It is 3:30 p.m. and the shades are put down.  She likes the dark and the quiet.

Kayla has not walked yet today.  She was enjoying the Teen Mom show on TV as she sat watching the barges go by on the river,

"Mom, look at that beautiful barge.  It's low in the water. Why?  It is supposed to be like that?"

A tug boat is pushing the barge down river now.  They have come from under the George Washington Bridge and into our sights.  Very calming.  Water is gray.

"Mom, take the "Marcy bud vase" back to Tarrytown.  I would feel terrible if it broke.  Very guilty.  Is it crystal?"

Marcy, my sister, has been gone since 1986.  We all miss her still.  She is a presence in our lives and this simple bud vase is one connection to her.  We have many wistful connections to her.

Kayla has been keeping a pink rose, given to her by Grandma, in it for days.  We have our methods to keep it going.  We take the rose out daily and clip the bottom of the stem on an angle.  We put in fresh water and powdered flower food.  It came back but was now just holding on.

"Maybe some more time for it, Kayla," as I look at it.  Kayla will do anything to keep a flower going.  She gently lifts it out and the petals all fall past her hand onto her hospital tray.  She looks sad.

"Oh, it's over," I say.

"I hate to see it die, Mom."

"Oh" is my slow response.

"I don't want to die in pain Mom.  I don't want a long, slow death."

"I know....(pause for a minute)....I feel positive Kayla.  We can go home, build you up, wait for a heart.  We can do it."

                             - - - - - - - - - -

 I come home by 6 p.m. and plant flowers with little Eli.  It's still 90 degrees out (it was 96 in Central Park).  It is so hot we abandon the planting as we are dripping.  Michael has a large slow back-and-forth sprinkler going by the kitchen window to water his beloved patch of grass.  He does not want it to die like last year.  It is luxuriously green and the high sprouts of water are very tempting. 

I encourage Eli and he begins to run and play in the water.  He has all his clothes on but who cares?  He is full of pep.  He is making the most wonderful, loud yipping noises - the sounds of a happy unencumbered child...

"The Kayla" - Tuesday, June 7, 2011 - "The Inquisition"

Kayla Quote:  "Listen to the mustn'ts, child.
                           Listen to the don'ts.
                           Listen to the shouldn'ts,
                           the impossibles, the won'ts.
                           Listen to the never haves,
                           then listen close to me...
                          Anything can happen, child.
                          Anything can be."
                                                   Shel Silverstein

Short Synopsis:  Kayla, Mike and I are doing extensive training to learn how to operate the VAD (Ventricular Assist Device) machine so we can take Kayla home to wait for a heart.  If the machine fails, we have to be able to get her up and running quickly on a second machine.  Her compromised transplanted heart cannot support her body in any way.  It no longer can beat on its own.  The trainers are excellent and we try our best.  Today Kayla and I did an open book VAD test together to make sure our knowledge was sound.  There is also a meeting with the team to go over all kinds of detail.  Exciting but scary.  Kayla is stable and ready for home.  She has been here since the end of March.

Long Story:  Kayla is ready to be discharged to go home to wait for a heart.  There is excitement and fear all rolled into one.  Kayla wants to be with her friends and be home again.  She has been talking about it for days.

                                                   "The Inquisition"

Kayla, Mike and I are escorted into a medium-sized conference room.  There is one big long table with about 12 chairs around it.  It has taken a good deal of planning to get all of the different doctors to come with their current status reports on Kayla.  Each will express what we are all hoping for in her future.

Dr. Uriel is the head heart transplant cardiologist on service and in charge of this hospital floor.  He is the leader and a clear thinker and speaker.  He starts out saying that there is a clear need for a second heart.  Kayla is stable from a cardiothoracic perspective.  She has been in the hospital for 10 weeks and has had this pump for 6 and is doing well with it.  The meeting is all about what we need to do to be ready for the transplant.  The inquisition?  Dr. Uriel expresses that the pain killers are a very big limitation to getting a transplant.  The amount Kayla is currently on, including the methodone, will cause a lot of problems.  We need to limit the number of people (outside doctors) who can prescribe these pain meds so we can see exactly what she is using.  She has kept a "pain journal" in the past. In it, she records what pain she has and what she uses to help that pain.  He has discussed this major problem openly with her many times and has let her know she cannot get a transplant with her current level of meds.

I like this man!  Kayla has a hooded expression on her face.  Her eyes are darkening and she is sinking into her wheel chair.  What they don't know about our Kayla is that she is strong, probably one of the strongest people I know.  I would have checked out a long time ago with this life.  I cannot believe she is even here with us and how often she has beaten the odds by the thinnest of surviving threads.  There are very few people who make it 12 years past their first transplant, nevermind, being here all ready to receive a second one.  She has weathered numerous overwhelming heart failures and has suffered three strokes.  People think you get a heart and it's all hunky dory...that your life is normal.  It's all about getting the most out of that newly transplanted heart as possible.  It's a waiting game.  You squeeze as much life as possible with meds, doctoring, repeat hospitalizations due to immunosuppression, etc...  It's all about desire to live.

The pain medications help her cope with incredible amounts of physical and psychological pain, more than any of us have had to go through our entire lives.  Kayla is an inspiration to all of us not to give up even though every day she wants to.  She continues to be a walking miracle and Columbia is excited to have someone like her.  She defies all the odds every day, every hour, every minute.  She is still a breathing spirited girl who wants what every else easily has....a normal life.

Kayla is angry all the time, angry at her predicament, angry at her unfair life.  She started out with so much confidence and has been knocked down at every turn and still she is here with us.  If I know my Kayla, she will get off those damn pain medicines she needs right now.  She can do it.  She just needs time.  She needs home.  She needs her friends filing in one by one through our home, lifting her spirit.  She needs to get dressed up in some beautiful clothes and make up and go out dancing and dining.  She needs to be a 26-year-old looking for a mate.  She needs love and encouragement.

The next one speaks. It is David, her physical therapist.  He has worked hard with her to get her walking again.  His report details that she can walk independently with the BIVAD.  She can pull along the luggage device and go up and down the hall and up and down stairs.  At home she must increase activity and must be self-motivated.  He is giving her a program to follow at home to gain physical strength.  The stronger you are going in to the transplant, the easier it is after the surgery.  One must be a self-starter.

Physical therapy will come to the house to help but a lot more is needed.  A lot of walking...frequently!  He details that walking around 4 to 5 times a day would be ideal.  Motion and mobility is very important.  Malls open early for walkers and there is air conditioning there.  This would be a good place to go.  She must walk with a purpose and walk for exercise.

Dr. Kent, the psychiatrist, spoke next.  Kayla is "doing well" and coping with enormous amounts of medicines which are necessary and good to stay on for the time being.  She no doubt has been through a terribly painful surgery (4 large canulars in her body as one part of this whole scenario) but it is getting better and better as she goes along.  I asked, "What do I do if I run into trouble with more real pain?  She is on so many narcotics."  In the short term Kayla will need similar amounts that were needed in the hospital but long term there will be a tapering of the methadone.  Dr. Kent spoke with Kayla's local psychiatrist, Dr. Ligorski, and he was willing and able to carry her forward.

Dr. Schuman, the pulmonologist, was next.  Her lungs are stable he informed but the lower lobs are not ventilating well yet.  She is sitting in bed too much and needs to move.  Her blood pressures are stable 90/60 or 100/70.  The pump totally supports her heart and supplements it.  There is only prednisone now for immunosuppression.  No other drugs are needed.  The old heart is only a vessel for blood to be pushed through.

The BIVAD pump that she is on has been on the market for 15 years and is FDA (Federal Drug Administration) approved.  It is a very successful device.  Most of their patients are on the LVAD (Left Ventricular Assist Device).  There are only 2 patients currently at Columbia on this BIVAD device.  Both of Kayla's heart ventricles were severely compromised during the cardiac arrest on April 1.  That was the reason for this device.   At home we are to measure her blood pressure 3x a day.

Then it was back to a general overall discussion.  Kayla is a re-transplant.  This is much more complicated.  Her body has waged a war against this first transplanted heart for 12 years.  There is a build up of antibodies which are still in her system and will make things more complicated if and when she is lucky enough to get a new heart.  At 14, with the first heart transplant, her body was brand new to this assault.  Even with all the wonderful medicines, the body still cannot be tricked into thinking that the foreign heart belongs in it.

Kayla needs a certain size heart (she is a small woman) and a certain blood type - O positive (the most popularly needed blood type so the list is longer).  They have to cross match antibodies.  There is a certain period of time between transfusions where they continuously need to check her antibodies.  The test is called the PRA - Panel Reactive Antibody.

The recap: at this time she is thriving on the device and getting stronger.  Her last 6 weeks have been totally stable from the cardiac perspective.  There is no need for an oxygen tank.  Most importantly, the pneumatic device can handle warm weather but it cannot handle water.  If there is rain, Kayla must not go out into it.

Dr. Uriel says we are looking to the future now and planning for it.

Wow!  This is really going to happen.  Kayla is destined to go home to wait for that coveted heart!

"The Kayla" - Monday, June 6, 2011 - "The Homeless Man"

Kayla Quote:  "You are going to come across people in your life who will say all the right words at all the right times.  But in the end, it's always their actions you should judge them by.  It's actions, not words, that matter."

Short Synopsis:  This waiting for a heart is incredibly hard.  They will be sending in a team of psychiatrists.  She is in horrible physical pain and her emotional anguish is desperate at times.  We bring her special foods to comfort her as she waits.  They keep talking about a discharge plan so she can go home and wait there for a heart.  At the moment she is stable and they send those patients home.  

It will probably be a year before a heart is offered.  The waiting list is long, long, long.  They are fair and give the donated hearts to the ones who has been waiting the longest.  Unfortunately, they are also the sickest.  By the time you get your heart you are near death and it is your last chance at life.  There are over 200 people waiting.  This is not like when she was a child and was given top priority.  She will have to be on the BIVAD machine to keep her heart going and the blood running richly to all of her organs and brain.

Long Story:   It is 5:30 a.m. and "the Mooms" has brought a baby sparrow in through the cat door.  I am awakened by its pleading cries.  Mooms has deposited it at the end of the hall in front of a closed door and there is no place for it to go.  It is in shock and lying there with its wings splayed out.  Mooms quite often gets the young inexperienced birds, the "teenagers," the ones who have recently left their warm nests.  Mooms is crouching, resting, and waiting for it to move.  Even a tiny little movement will excite Mooms and she will go in for the kill.  This is the end game now.

I grab the cat and toss her into the bathroom and close the door.  I  pick up the young bird, cup it in my hands and inspect its body.  I feel its tiny heartbeat.  It is still alive.  I warm it for a few minutes with my hand and look at its sweet black eyes.   Warming it is the top priority if it is to have any chance at life at all.  I bring it outside and place it gently on top of Mike's kayak in the yard.  It is sitting quietly there.  This is the next phase.  This part can take a long time...waiting for the shock to wear off.

I really want a cup of hot coffee so I fetch one inside.     I let Mooms out of the bathroom and she rushes to the window to see where her prize has gone.  She is pissed, her black pupils totally dilated.  I pad back outside.  I am in my pajamas still.  It is peaceful, the best time of the day.  Few people are up this early.  I pull up a lawn chair and sit a respectful distance from the bird, sipping my hot drink.

The next few minutes will tell a lot.  Will it keel over or will it fly?  The wings are not broken and there are no puncture wounds in its body.  It's always the same.  Mooms catches her prey gently in her mouth...plays cruelly with them...the kill...she eats.  Bird meat is a special treat.

In a  sudden small burst, the little bird flys up and lands in the lowest branch of the nearest tree.  It is very wobbly.....success!

                    - - - - - - - - - - - - -
 Pip looks completely different!  Violet spent a long time last night plucking out all the fluffy white downy feathers from his body.  They were floating around the nest, looking like a burst pillow from a fun pillow fight.  With precise detailing, she carefully preens the baby bird and takes each bit out.  Well not quite.  There is still white fluff on his head.  The rest of him is black with brown threaded in.  He looks like a porcupine.  No..more like a half sized hawk!

Wow!   Does this mean he will fly soon?
                     - - - - - - - - - - - -

6/5/11
Steph:
So great for you all!  Will try to stop by.  Mum is tired of all this.  Gotta get good soon!
Love,
Beth



6/6/11  3:15 p.m.
Beth:
I spoke with Arnold last Saturday.  Special man.  We gear up to bring Kayla home.  Prayers for your family.
Love,
Steph


6/6/11  3:30 p.m.
Debbie:
I came by and stopped in on your mother.  I had them empty the water out of the respiratory tube.  There was no place for the air to go through.
If you want company, please stop by the 7th floor, Room 148.  (You can get there by the stairs.)
Kayla has a beautiful river view in a single room.  We've made it in the hospital world with this room.  She is going home in a few days to wait for a heart.
Stephanie

Monday, June 6, 2011  8:05:08 a.m.
Subject:  Hope You Are Better!
Hello Kathy:
Well...I slept and slept and slept and now I feel great.  I got up and went to Stop & Shop and bought some cooked chicken and potato salad.  Mike went to see the muffin.
 I hope the medicine is working.  Let me know how you are doing.
I went on-line and studied all the results and it was fun.  Those damn ringers!  I have more fodder for my triathlon folder.
I would like to do some more sprint triathlons.  Actually there is some sort of swim in Greenwich off the coast.  Will look it up.  I think you can choose whether you want to swim a half mile, 1.5 miles, 3 or 5 miles...I choose the 1/2 mile!
Lots of love to you!
Stephanie
                              - - - - - - -

Thomas's landlady, Pamela,  is having a bad spell.  She just had surgery where they removed some sort of tumor and her closest, dearest companion, her Dad, died April 16.  He made it to his late 90s.  I was lucky enough to meet him and enjoy his storytelling.  He had a pet squirrel that ran up and down his arm and hid in his jacket sleeve and he relished telling me all about that as we sat around a big fire that Thomas had fully going in the fireplace.  This was the old man's special cabin since 1951 and he worked endlessly over the years maintaining it.  There is a rich history to this place and have I detailed this already?  Not sure.

In the beginning, Rudolph came over from Switzerland and in 1951 bought this cabin on a sleepy stretch of road.  (Today it is the Super 7 connector between Ridgefield and Danbury.) He and his wife made it into a restaurant.  It had 6 tables and they built a bar.  After a while, they built a small addition with bathrooms.  Over time, this tiny room became a small gift shop and today it is a small bedroom where only a twin bed can fit.  They built another building attached to the original cabin with two more apartments, one on top of the other.  I believe in the late 1960s his wife died from cancer and that was the end of the restaurant.  They went back to Switzerland and it was rented to many different people who came and went.  It became a brothel in the 1970s because the men could drive off the now growing highway into the large parking lot, do their business and hop back into their trucks.   Am not sure how long that lasted.  Into the 1980s, the brown house complex saw many more renters come and go.  Working class people have rented one of these apartments at one time or another.  It also seems that some men from town know too much about the brothel..were they patrons?  They do not admit that of course.

After a time, Pamela and her Dad live in the top apartment unit, vacating the larger original cabin space.   When they come in from Switzerland several times a year, this is where they resided.  Their possessions cozily fill up the two bedroom, one bathroom unit.  The other two places see an ebb and flow of renters coming and going.    My son moved in June 2010 and said to me with an inquiring face and referring to the whores,
"Where did they do it?" 
"In the bedrooms!" I told him.  "Where else?"  Hey, the entire complex been christened with a rich, divergent history.  At least now it is clean!

Pamela is also an incredible storyteller and I love being with her and listening to it all!  But now her dear dad is gone.  It would have been fitting to bury his ashes on the property somewhere since this place has part of his soul embedded in it.  At 96, he was still pulling himself under the building, dragging his body across the top of bare wet musty dirt, to fix stuff. 

I tell Pamela I am bringing purple morning glories to plant in her back yard.  Dubbed annuals, according to the package they came from, they were supposed to grow up only once and die forever but they have proven themselves to be perennials coming back every year.  I must have gotten a very good package of seeds all those years ago, seeds with their own mind.   I have hundreds of tiny plants every spring...a bunch of swarming marching soldiers with little purple heads invading more territories.  I give them away to all of my friends.  They go anywhere and stay everywhere.

When I get to Pamela's overgrown flower bed, I pull out big ugly grape looking weeds and plant the tiny morning glories soldiers along a dilapidated trellis... they will be majestic, rising up on strong vines, searching for the sunlight.

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

Gracious Debbie comes by to say hello and meet Kayla in her new river room.  She lifts me up with her spirited talk about Shaquille O'Neal, the great basketball player with the size 15 shoe.  He is returning to basketball one more time to have another try.   It is all over the news.  You go boy!  Hmmm....I am not sure I like his style.  He hangs out below the basket and wards everyone off in a stomping big man way.  He is the strongest but I like the flowing players better, the ones that move all over.  Still, very few can get by Shaq!  A big mountain you cannot plow through.  You have to go around him....only way.  Get him off track and go around...

The psychiatry team has arrived, two of them, to see Kayla.  I leave them in privacy and go to fetch a strawberry smoothie at Starbucks.  They make a mistake and give me a coffee one instead.  Later, Kayla let me know, she was not happy - "I wanted something different."   Am hopeful the head shrinkers can help my poor daughter.  I can't even begin to imagine what her life is like.  She is the bravest person I have ever met.  Every day she teaches me patience.  All I can do is give her a mother's love, one of the purest things in nature.

I leave the doctors with additional hope...no more like escape from this prison.... I want to give Kayla something (smoothie) she can enjoy in her sea of pain.  Oh yes!  I will get supper for the two of us.  She loves the caprese sandwiches and I love the nourishing simple soup.  The now familiar walk up the one block to all the small bustling restaurants on the street is soothing.  Observe everything.  Isn't that what all writers do?  Watch and record?

                                                    "The Homeless Man"

Jou Jous Eatery is close by, very chic, clean and full of the latest healthy foods for all to buy.  Inside there is a middle-aged black man in raggy clothes that are not particularly clean.  He is holding up a winter coat and trying to sell it.  The clerk is annoyed.

The food is in neat piles - fruit salads, sandwiches wrapped up, desserts....right there in front of you for the taking...no...for buying.  A long row of delicious choices on low shelving in refrigerated spaces.  The man bends over to inspect and straightens up,

"I am a salesman."

He smooths the coat gently over his arm as if he is pressing it with an iron.  No one is buying.  He needs it out of his way so he can touch the food.  He picks up a yoghurt dessert with fruit and granola and holds it up.

"$2.72," the clerk says.

Homey tries to get the price down a little.

The young clerk is curt and not sure what to do.

"I said $2.72."  The fingers of one of his hands is poised on the cash register but he has not put in the price yet.  He is nervous.

"Oh PLEASE HELP ME," pleads the man.

Homey turns and tries to get a dollar from me.  I just stare at him.  He is harmless and desperate but I am scared too.  He lives in the homeless shelter just up the block at the armory.  That is where they all are.  They mill around every day doing nothing.  Most people won't walk past that way.  They choose the other side of the street.

Depending on my mood, I walk one side of the street or the other.  When I walk past them, I am curious about what they will say to me or what they are saying to each other.  Most of the time they are mute.  Some of the time they are lecturing each other.  When you look at their eyes you know.  Their lives are awful but they are fed here.

Homey is polite.

"I bought two of these before."  He carefully pulls out three one dollar bills and puts them on the counter.

"I'm sorry if I bothered you.  Can I sit and eat at this table?"  There are three of us now and we are all uncomfortable.  Did his mother love him when he was born?  Was she excited at his birth?

I get my food.

I pass his table and put a $5.00 bill folded in half next to his hand.  Surprise!

"Thank you.  Thank you mam!"

"I'm not a man!"

"I said mam."

"Oh."

He brightens,  "Do you go to church?"

"Yes, I do."

"Catholic?"

I am still  frightened so I cannot face him.  What if he follows me?  I am getting my plastic silverware and napkins a few feet away.

"No more.  Protestant now."

"Where is your church?"

I turn around.

"In Connecticut.  I don't live here.  I am here because my daughter is very sick.  She needs a new heart."

"I am sorry," he shows his lack of teeth in a big nice smile.  The remaining ones have brown crusted on them at the gum line.

Wistful now...."Please say a prayer for her.  I don't know if she will live."

"I will.  I will."  Homey is genuine.

I leave.  Probably will never see him again as long as I live.  He has given me a prayer.  For this, I am grateful.

"The Kayla" - Sunday, June 5, 2011 - "The Triathlon!"

Kayla Quote: "It's not that you are bitter...you are scarred in every way possible." - Ashley Jerry

Short Synopsis:  I have no idea how Kayla is today.  It is Michael's turn to visit her at the hospital today and on the weekends, it is generally quiet there as most of the doctors take a rest.

Long Story:  Finally the triathlon looms.  I was about to give it up but am hopeful the stair climbing at the hospital has given me some fitness.  I am determined to finish,  feel good and enjoy the race.

The director of the race sends the competitors out into the water in small groups at the start of the race.   The youngest, fastest athletes go out in the first out of 8 waves.   All of the older women are in the last heat to enter the water.  This is how it is set up because you cannot have 400 people enter the waters of Great Pond across about a 25 foot span all at once!  We wear different colored race caps so the race planners know which age group you are in.  We also have our age written onto our leg.  

It is hard enough to enter the water with the smaller groupings.  There is always some arm lashing and foot kicking into your body from the other triathletes as everyone attempts to claim their rightful path in the water for the 1/2 mile swim.  I always line up at the far left side so I have plenty of room and I let the others go first.  I am in no hurry.

Kathy, Rick and I are just about the only ones who never wear a wet suit.  I dislike wet suits.  They ruin my stroking by buoying me too high in the water.  I do not feel free in one.  I would rather be in colder water and swim smoothly.  We are old school.  These silly athletes who wear these black rubber suits do not realize that the water is quite warm today.

Kathy and I  stand at the water's edge to compose ourselves.  She tells me she is nervous.  I am quite surprised.  Kathy has a calm, gentle, sweet manner which belies her competitiveness.  She wants to be the best.  I tell her I am calm.  I have nothing left to prove.  She is out to win and I am out to be fit. 

"I am going to enjoy myself,"  I tell her.

I notice next to us there are some women who look like national competitors...3-4 of them in a pack.  They have traveled from some other far away place to use this sprint triathlon as a "practice run" for some other more difficult event later.  This is not unusual but they are in my back yard and I am annoyed!  They finish well over an hour and a half ahead of me for the entire race.  This is no competition.  I will never catch them in my life and they have taken my local medal away from me!

But!......I take 13 minutes of my last year's time and am pleased.  Kathy places first in her division so the "ringers" did not beat her but she is in an older category (age 60-64).  They are in my category (age 55-59) so Kathy did not feel their heat.

Well done!  Will look forward to next year....

                   - - - - - - - - - -

Mike and Thomas are working industriously in the garage.  They are building shelves for all of Thomas's car parts and tools which have been laying all over the floor.  There was no room to even walk.  It is beginning to look like a well-organized car mechanic's haven.   Grand!

Steve Palmioto (he has 7 kids) showed up with his son, Patrick, yesterday.  He is trying to get the old French moped to work.  No one seems able to get that thing going.  He is interested in buying it as a play toy for his kids to use in their yard.  Thomas justs wants to sell it.  Today Steve showed up with a daughter Julia.  He still can't get it to run very well...it keeps sputtering out.

All is settling in at the Trolle household.  Michael is ready to go see Kayla at the hospital.  He will stop off in Yonkers at that Dunkin' Donuts off the Saw Mill Parkway and purchase one of her favorite foods - a icy coffee coolata made with skim milk. 

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

 It is late morning and I convince Kathy to go to the Rec Center for the jacuzzi and steam room and I bring her some of my prescription anti inflamatory medicine - naxoprene sodium, 550 mg.  She is in pain with her foot.  It was injured before the race and she wasn't sure she could compete but then felt she could.  The medicine is to be taken once a day with food to reduce the swelling.

"If it works for you, get some from your doctor," I tell her.  "I use it rarely...only when absolutely necessary...that and ice."

                                  - - - - - - - - - - -

In the early evening I go to see Thomas at Stop & Shop where he is working in the bakery.  Sometimes the children pass by and he gives them a fresh cookie.  They are so pleased.  I buy a cooked chicken and potato salad for an easy meal over the next few days. 

I called Nina Killie, my dear friend Nancy's daughter, who is very much an animal lover from an animal loving family.  I tell her all about Pip and she is quite interested and looks on-line to see what is going on with the baby hawk on the live video camera.

                             - - - - - - - - - - - 

Bobby, the father hawk, is a fierce protector.  He has many perches that he settles upon to watch over Violet, the mother and Pip, the baby.  All of his favorite spots are nearby and high.  Hawks have about the best eyesight in the animal kingdom.  He is scanning for any other flying creature that could harm his offspring.  Nature says he must do his best for Pip to survive.  He will look you dead in your eye as you are photographing his baby, right through the lens....his sharp eye to your surprised eye.  Nothing seems to get by him....the vigilant sentry!  He may look lazy and relaxed and fluffing his feathers but if something seems dangerous, he is snapped to attention.

The nest location is on the top of the Bobst building which absolutely resembles a fortress.  To Bobby it is a safe place to raise his baby hawk.  To the humans, it is simply a library at the college.

For his guarding duties,  he likes to settle on the cross on top of the Judson Memorial Church.  There is his favorite near by flag pole which is higher than Bobst by two stories.  There are various other perches around the perimeter of the park all atop tall buildings.  The tallest place he perches is about 2  blocks away and is at least 10 stories higher than the library.  Clearly Bobby has this territory definitively marked as his own.  Bobby actually had a nest on Fifth Avenue which failed in 2010.  This was before he settled on top of Bobst, which as we all know, is the location of his first successful nest.  He will come here for many years to come.  This is home.  He is at his peak to supply nature with as many baby hawks as he can and he must!!....since less than 20% of the first year fledglings survive the first year out of the nest.

Bobby wards off  innocent hawks who are trying to fly past...

Sweet little Pip, a big fluff ball is asleep all curled over in the nest.  His camouflage colors are still soft and blend into the colors of the nest.  He is invisible to a predator's eye.  Safe.  You can see his restful breathing.  That is the only movement in the nest.  Violet is out.  She must be hunting for food or taking a rest herself.  

Bobby is doing all the hard work at this moment....


           


 











 
























 












  

"The Kayla" - Saturday, June 4, 2011 - "Go Home!"

Kayla Quote:  "Think of our lives as an extension of each others...we never leave each other...we grow together and each life is a branch of our own."

Short Synopsis:  Kayla is having trouble walking.  It seems there is always a reason to keep her for a bit longer in the hospital.  Things are progressing but it will take time.  She is full of anger and bitterness.

Long Story:   There is so much pain in Kayla's life.  How many ways can one say the word pain?  Let's see....suffering, dolor, ache, smart, shooting, twinge, pang, gripe, hurt, cut, sore, soreness, discomfort, cramp, crick, stitch, spasm, convulsion, throe, throb, colic, gripes, torment, torture, agony, anguish, rack, crucifixion, martyrdom, bleed, writhe, wince, inflict, lacerate, chafe, sting, bite, gnaw, stab, grate, gall, fret, prick, pierce, wring, torment, rack, agonize, excruciating, sore, raw....geez....Kayla is feeling a lot of these today.

Oh yes!  How about moral pain?  Disquiet, dissatisfaction, uneasiness, irritation, worry, infliction, plague, anxiety, sorrow, distress, affliction, woe, bitterness, heartache (really!), fret, sit on thorns, fume, take to heart, grieve, mourn, lament, pine, droop, languish, sink into despair, wretched, miserable woebegone, cheerless, dejected....ok, the best one - brokenhearted! Kayla is definitely brokenhearted.

The poor thing!  She has those big tubes in her body and it's sore when they enter her just beside her stomach area.  They are interesting to look at - the two are flowing bright red and the other two are maroon.  Pump...pump...pump...whir, whir, whir.  That's what your blood does inside of you as it empties and fills with oxygen from your lungs.  But hey!  We don't have this physical pain every single day! 

 Much of the time, Kayla tells me, "I don't really want to live.  Why did you want me to live?"  

She explains it would have been easier to let her go.  I couldn't let you go....I AM YOUR MOTHER!  I am all about life!

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

I wake up in Tarrytown determined to get to the hospital earlier today.  Dad follows me around and chats with me but I am all about leaving.  

I get to the hospital by 9 a.m.  Kayla is sleeping so I go to my special writing corner at the end of the building.   It is empty.  I sit and rest and look down at all the traffic one block from the river. The cars look like a bunch of Matchbox toys for boys.   Even early on a Saturday morning everyone is rushing all around.  Where are they going?  The bridge is glistening in the early morning light.  It is backed up with traffic as usual.  It never empties except in the middle of the night when they are ferrying a heart across in an ambulance bringing it for implantation for life for the next person waiting here on the donor list.  Kayla is too low on the list to be hopeful yet.  She has a few more problems for them to solve as well.


I am almost missing the disheveled Jewish man who at least is an intellect.  He quietly reads his bible and other works when he beats me to the coveted corner.  If I could just catch a glimpse of him in the hallway at least I know he is still alive.  At least I know he is still doing his vigil, as am I, for a beloved family member.  I could even tell him I have vacated the corner, that it is his turn.  I am not in the mood today to do anything except exist.


I go downstairs to hope for oatmeal but of course there is none on the weekend.  I can have the fantasy that it is there for Kayla.  It makes her  happy.  It even gives her joy as she is experiencing all the pain and grief words.  I wish her spirit wasn't as broken as it is.  I buy salad for breakfast, a terrible choice but I don't want to leave the building in case Kayla wakes up.


I call Arnold.


He is happy to tell me, "There are special letters everywhere in her papers.  Little letters."


"Letters?"  Yes, letters of love and hope.  Little bits of saying hello to her family.


"She knew she was dying but she didn't say anything to us.  We look forward to finding them.  We keep hoping to find another one."

 He has placed her ashes beside her beloved computer.  She enjoyed being at that computer.   Sometimes the computer lights up at night.  If it does, he laughs.  He says it is her.  He is selling the house they were in for 40 years.


"Isn't that hard?" I ask.


"Yes....no!  Without her in it, it's nothing here.  Her touch is in every room.  I don't want to be here anymore."  How is our group, he asks.  We should have a special occasion and all get together he suggests.  He is missing us.


He continues, "We had no service.  It was too late.  It took a month to get her back.  The autopsy took too long.  It said all her organs failed but we don't know everything.  It would take $5,000 to get all the records and I don't have that kind of money.  I wanted them for my granddaughter who is interested in medicine....I am so glad you called."


I do a quick survey and tell Arnold, "Judy is on the 9th floor, out of the ICU.  It's like a holding tank for her up there.  She is in dialysis all the time and she's not responding at all.   No wakefulness...no reaction to anyone.  Still I go and touch  her and talk to her.  She is Mordechai's mother.  She is all of their mothers.  Roz is on the fifth floor with her devoted daughter by her side always and Kayla is on the 7th floor with that beautiful Hudson River view.  She likes to watch all the action on the water and there is lots of action, like special police boats when people jump off the bridge and they do.  Otherwise, she enjoys watching the barges lazily going about their business up and down the river.  She sits in a chair and looks out and she watches Pip the baby hawk on her internet.  She's in a holding pattern, waiting for someone to donate a new heart for her."


"You are all separated now," he says quietly.

We enjoy talking about the closeness of our special group.  We were people from all walks of life, people with loved ones with heart problems.


                                 ------------------------------------
Cousins Ryan and Russell come to visit Kayla so she has company, her favorite thing.


She gets pissed at me when I tell her she is demanding too much from the nurses.  This is not room service at a hotel.  The poor nurse tells me out in the hallway, "I hope when she goes home she won't be calling here every day."  Who are we to complain to her?  We walk without pain and have decent heart action in our bodies.


Kayla is having trouble walking.  Her feet are in too much pain.  I meant to keep all of this inside of me but I couldn't help it.  Kayla should think of the nurses.  Kayla did clean up her tabletop - a small accomplishment, but a good one, nevertheless.


Since she has other company, she can tell me, "You've hurt me again.  Just go home,  I want to be alone!"  I didn't get to sponge bathe her or wash her hair, things we had planned to do.  I feel terrible, but free.


I leave.


I see the Bonistallis in the grocery store at home.  I tell them Kayla is very excited about Jeff's film he is making.  Kayla wants to be an extra and am informed that the extra scene will be on June 25th or 26th.  Jeff needs a rustic bar for part of his film making.  Thomas has a rustic bar in his cabin.


Tomorrow is the triathlon....wow!  Should be good and a physical break for me.  Let's see if all that stair climbing at the hospital did me any good?  Was it decent for physical training?  Hmmm.....

































































































































 

"The Kayla" - Friday, June 3, 2011 - "Panic Stricken"

Kayla Quote:  "You need to tell someone else, not me.  I cannot handle it."

Short Synopsis:  Kayla is excited to be leaving but emotionally fragile.  She needs to be treated carefully with "kid gloves" as they say.

Long Story:  It is 6:15 a.m. and I go bike riding with Kathy, Lisa and Robert.  We are all in training for the triathlon.  Lisa sets the pace and they take off.  I am alone early in the ride.  There is mold in the bottom of my water bottle that I did not know was there (from the year before) and I gag on it.  I hit every red light along the 14 mile route so I have no chance to get them in my sights.  My chain falls off and I precisely put it back on.  My hands are full of black grease.  Still, it is the most perfect weather and I look forward to the red raspberries that are ripe along the way.  Will stop and snack on them, plucking each and every one off.  There are deer posing in still repose as I pass them.  They look fake.   It is peaceful and quiet, belying the day ahead of me.

There are many details to cover in the morning.  I ponder the time results of my companion cyclists.  They do it in 50-55 minutes.  I do it in 1 hour and 11 minutes.  I am a hanger-on-er. 

 I will make Kayla her favorite foods - hot oatmeal with brown sugar, cinnamon, raisins ("Bring to me and I will put it all on," she commands) cut up watermelon and a skim milk coffee coolata gotten along the way.  Food is a soothing comfort.

I email Mack, a local journalist,  at the press asking him if he is "MackBRead" a follower of my blog and he never answers.  I assume that he is.


All the animal kingdom antics occur in our home.  This morning I spend time rescuing a young chipmunk in my clothes closet.  Babee and Moo Moo are there waiting to grab it.  Their eyes are big and black and evil looking.  I use them to flush creatures out of their hiding places.  This one is tiny and a goner without my intervention.  A big bowl is plopped on top of it.  It is slow and in shock.  Its rug like fur is perfectly orange and I wish I could touch it.  The cats watch but are now in the closet snorting all the lucious smell into their nostrils.  I sneak out and release the hapless critter in the far reaches of our yard.  It slips into the haven of the stone wall.


It is later now and I check on these two cats.  They are both sleeping in the office downstairs near each other.  Hunting is over for the time being.


I look everywhere for the pain journal which has been inactive for several months.  I finally find it in the pink bucket with the many different bottles of Kayla's old medicines.  She will be on everything different now.  These were meds to keep her deteriorating transplanted heart going.  They are useless now.  There will be a whole new list of medicines that she will be discharged with.  I will put these in alphabetical order and line them up in the special cupboard where we keep all old medicines in the basement so heat and moisture don't destroy them.  They should be thrown out but the doctors at Columbia say to keep them for now.  Some may be needed.

I get caught up in cleaning  Kayla's desk downstairs.  Wow!  It really looks great.  I respectfully put all her hand-written notes in a plastic zipper bag.  Some of the detail on there will be important to her in her future when she can pick up her life again.  Most of the little pieces of paper are "to do" lists with daily detail.  She has not lost her ability to plan what she wants done each and every day.  When the desk drawer is opened, it is full of older plastic bags with more daily lists.  Life on hold.

I cannot make the 1:30 cardiologist meeting that is hastily  made at the last minute.  I call to tell Kayla that the notice was too short.

"You should have called at 12:30 to let me know," she replies.

I tell her, "My stomach hurts."


She thinks I am sick.  "No, it's stress."


Kayla doesn't want her parents stressed out and worries we are being done in by her.  She says she can't live with herself.  She then calls Thomas and Mike and panics.  She doesn't want me to drive.


"I am fine," I tell her.  "I can drive through anything.  Driving calms me down," I am emphatic.


Then the phone calls follow me.  


Mike says, "She's emotionalyl fragile.  She has hyper sensitive reactions and panics.  You have to bottle it up!"

"I wish I could.  I am not perfect.  I am overwhelmed!  There is lots of pressure from everyone in the hospital to get her out.  There are many, many details!"

"You have to let some of them go."


"I do."


"We will have plenty of help for you when you come home with her."


"I know."


I thank him for his kindness and gentle approach and he does not blame.


"You might considerf MBSR (Mindfullness-Based Stress Reduction) to relax," he adds.


"I already use many techniques of my own...have for years.  I have my ways to relax.  It's just waaayyy toooo mannyyy details at this moment!"


As I drive to New York City, I feel empty and anxious.  I am drowning again.  I call Bumpy.  She is on her way to Albany with her sister Anne.  They are trying to see their ancient "Uncle Bob" who is 90 and not well.  Unfortunately he has a gatekeeper so they "probably won't get to see him."  She is bubbly and content to be on the road.  She calms me down.  I wish I was with her.


I see Kayla in the waiting room.


"You need to tell someone else.  Not me!  I can't handle it," she says.  She needed an extra dosing of Ativan and they also gave her percoset to relax her.  She stands up and walks to me.  She is sad, wistful.


We go to her room and I lay across her hospital bed in exhaustion.  I don't want to be here.


"What is God's purpose for me Mom?  Why is he making me suffer this much?  How will it turn out for me?" she laments as we are next to each other.


I am getting drowsy now, "I think when you get the next heart, you will have a good quality of life,"


She is pale and her blood pressure is low.  They will keep her for a while longer.


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


Emails ---




Wed, June 1, 2011, 11:21 a.m.
Val:
I have the sheet out.  Want to come and welcome Kayla when she comes home from the hospital?  We could put up the sheet.  They say she may be released in about a week.
What do you think?  I won't know the actual release yet.
I don't want a big crowd but you would be great.
Love,

Stephanie

Wed, June 1, 2011, 11:47:17 a.m.
Hi Steph! That is great news.  I plan to hang out with our Kayla ALOT more when she is home.  I am planning to visit, along with Mom, tomorrow at the hospital.  That Kayla is just the cat's meow.  We are going away next week!  Yikes.  We will be gone from Tuesday through Friday.  I drop off Chloe (their dog)  in Bethel on Monday and pick her up the following Saturday.  Let me know, when you know, Kayla's ETA at home and I will try like heck to BE THERE.  Obviously, if I am in Virginia with Mike on business, I will not be able to make the big homecoming, but knowing hospitals, it won't go off on time.
Love to you and that cuddly, cat-loving, death-defying Muffinetta!

Val

Friday, June 3, 2011, 9:35:34 a.m.
Subject:  Re: Kayla's Homecoming!

Val:

They are saying between Mon and Thurs. for Kayla release so will see if you are around.  It was great seeing you and Mom yesterday.
Love to you too,

Stephanie