"The Kayla" - Thursday, May 26, 2011 - "Hartford Hospital Turns Down Kayla for Double Listing"

Kayla Quote:  "She's very, very sick, but she's in the right place." - Dr. Gluck, Transplant Cardiologist, Hartford Hospital, Hartford, Connecticut

Short Synopsis:  When I arrived on the seventh floor to see Kayla, she was being wheeled back from a scan.  Am not sure what they were checking but I know they were interested in her brain and lungs.  No one would tell me which scan they did.

It was not her best day emotionally.  She has been through more than most people have experienced in their entire lives.

Kayla was miserable when I informed her that Hartford Hospital had turned her down as a "double listing" candidate to wait for a heart.  We'd spent two months completing tests to be listed.  The last test was a TB one - that was it!

Hartford has an emerging heart transplant program, headed up by two transplant cardiologists who are "Columbia-trained" with a third German doctor at the helm.  You can get a heart there in 4-6 months.  They are following approximately 75 patients.  The atmosphere is much smaller and more friendly and the communication is tremendous.  At the same time, they want to only accept candidates who will add to their success.

Kayla felt we had wasted our precious time trying to be listed there.  They deemed her "too complicated" and they have no experience with the more complex PVAD device that she is on, assisting both her right and left ventricles.

Kayla did not want to know all the details of why she was not accepted and I had to respect her wishes and drop the subject.


Long Story:  The stress is incredible for me today and I am not strong at all.  Totally exhausted, I wept everywhere - all over town.  Decided to go back home and make two rhubarb pies from all the fruit I had picked from the garden.  I even had extra so I put it in Alice's mailbox next door.

Dr. Jason Gluck calls me to apologize for not getting back.  I had left a message on his voice mail, knowing he had come to Columbia for a seminar and wondering why he didn't stop by to say hello.

"You didn't come to say hello to Kayla.  We have a relationship with you," I tell him.

Gluck said he wanted to but wasn't able.  A great positive communicator, he tells me that he had brought up Kayla in their morning meeting and they made the decision to turn her down.  She is just too complex.

"Columbia is the best hospital, or Cleveland or UCLA," he says, "No one is as experienced or as capable as Columbia.  She's in the right place."

"Let me ask you this....should I go to the Boston Hospitals?  Should I try for double listings there?"

"No, there is not a single hospital in all of New England who is as good as Columbia.  No one else has the ECMO machine which saved her.  She is absolutely in the right place and much too complicated with all of her issues.  If you have another hospital, then you wonder who to follow.  There are too many doctors."

Dr. Gluck went on to explain that her heart is just a vessel now with blood flowing through it.  It is much safer now with the device and the body no longer has to rely on a weak heart muscle which can no longer pump. She can do well with the device and feel a lot better and have more energy to live.  There is no further damage that can be done to this existing heart in her body.  It's at its end.  The device is doing all the work!

Now it is a waiting game...waiting for the new heart.

I felt relief.

Kayla is agitated with all of this news.  She wants to plead her case and get a one month appointment and was too upset to see Hartford's point of view.  With a dying heart inside her body, who could blame her?

"Kayla, you need a direct communication with Dr. Gluck.  Maybe that would clarify things."
                                       - - - - - - - - - - - 

I slept from 4:30-6:30 down the hall from Kayla's hospital room.  The end of the building - it's the best kept secret in the whole hospital.  No one walks down there.  The entire corner of the building is covered with windows.  It's the closest view of the George Washington Bridge from Milstein's 7th floor.  I go here often for privacy.

I am shocked that I slept for two hours...

                                         - - - - - - - - - - -

Best news of the day? Thomas got a 20 hour a week part-time job at NAPA Auto Parts right across the parking lot from his job at Stop & Shop.  He was very excited about it.  He wrote a cover letter, a resume and a sheet detailing his education.  He shows us the papers and asks our opinion, only he had already given it to the boss at NAPA.

There was a "help wanted" sign in the door.

"Who is your competition?" I ask him.

"Two college boys."  Oh dear...

"No, Mom, I think I can get it.  They go back to school in the Fall and I have the background in Auto Mechanics.  I have the degree.  I stay on past the Fall."

I looked over the cover letter.  It is chock full of too much information.

"You already gave this to the guy?"

Thomas is excited.  Oh yes

"Oh jeez....no matter," I tell him.  "It is obvious you really want the job.  That shows clean through, but Thomas, I am surprised.  For a young man of few words, you have a hell of a lot of words here.  You are SO QUIET!"

Thomas was thrilled to tell me a day later,  "Mom, I got the job!" 

                                            - - - - - - - - - - -

Grandma Lori made us all BBQ chicken, rice and salad.  I didn't get home until 8:30 and was pleased to have a plate of food.  Mike and his parents want to go to the gym...  So sweet to see the three of them going off to exercise.

I went to karoke with my singing crowd.  We now go to Ritz Asia, our new home.  For $5.30 I get two cokes to sip all night.  I sing solos and duets with different people.  I dance all night.

Our crowd is energized by young 18-year-old Matt, our most talented youngster.  I sing "Clocks" by Cold Play with Matt and Jeffery.  Some of my selections for the night - "Don't You Want Me Baby?" -  Human League; "Stop in the Name of Love" - Supremes; our old stand-by that Jeffery and I sing - "Summer Nights" - Olivia Newton John and John Travolta from "Greece" and "Respect" by Aretha Franklin.

Energizing night with singers Jeffery, Jules, David, Susan, Matt, B.J. - SUCCESS!!  Oh yeah baby!

"The Kayla" - Wednesday, May 25, 2011 - "Take the day off Mom!"

Kayla Quote:  "Take the day off Mom!" - Kayla to her mom after being annoyed by her constant attention and attempt to control everything regarding her medical health.  "I am grown now.  I can handle a lot more."

Kayla text to her Mom in the next 12 hours - "Are you coming?
Steph:  No, Grandma and Grandpa are coming today.

Kayla calls mid-day:  "Mom, don't forget to turn on Oprah.  It's her last show after 25 years."

Short Synopsis:  Kayla is despondent.  She has been in the hospital too long and she has a cough.  Physically she is doing fine with her new VAD machine.  In a holding pattern, tethered to a life-giving machine that causes constant pain into your belly, this is not the best life.  Her peers are forgetting her as they strive in their own lives.  They are strong and on the run.  The hospital is too far away - an hour's drive each way. 

Sometimes she wishes she had been "let go" on April 1st, when she had the devastating cardiac arrest.  This is too hard, she reports.  All those around her encourage her as she waits for that much needed new heart.  She had no choice whether or not to continue her life - the surgeons saved her.

Other times, she is happy to be here and interested in all that is going on around her.  She likes updates on the many people she loves.  What are they doing?

She spends a lot of time watching Pip on the internet and watching her many favorite TV programs.  She reads magazines.  She enjoys visits.  She does her physical therapy and gets dressing changes.  She washes herself with special body wash wipes - no showers are allowed.

There is hope!  If only that special new heart would come...

Long Story:  Grandma and Grandpa Trolle have arrived at the Trolle household to stay for a bunch of days.  They are absolutely the most wonderful people, full of love and willing to help in any way they can.  They give me a break as they go to the hospital to cover Kayla.

I am on a mission to build up Kayla for her future surgery so she can survive it.  She is not active on the list right now as her lungs still need to be stronger and that takes time, but we can work on her nutrition and her physical fitness.  I tell Pops and Lori (grandparents) to bring her a favorite sandwich from Parma Deli downtown.  It's called a "capri" and she relishes it.  I pack fresh strawberries (another favorite - Kayla called them straw-be-beebs when she was a little child) and cans of leftover ginger ale from many months ago.  A bag of flat pretzels are also put in the food bag.

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

It's an absolutely gorgeous day - full of sun.  The sun has been hiding for weeks and everyone is sick and tired of the dreary weather but today, it is out in full force!

What to do..what to do...What to do?

I am as free as a bird.  I can't wait to do everything!!

I have lots of domestic work that is way behind.  I do loads and loads of laundry.  I enjoy folding and having clean clothes to put back in drawers.

I run around and do a ton of ditty errands.  I buy food at the grocery store.  I pay a EZ Pass fine - well, it's not really a total fine.  Apparently if you have a car that is not your original car for the pass, they send you a bill that is $50.00 for the fine and $4.00 for the passage across the Hudson Bridge.  As long as you pay it promptly, you just have to enclose $4.00.  This I do!

I survey my poor, neglected vegetable garden.  The purple irises are attempting to bloom but the red raspberries bushes are covering them.  I hack back the sturdy raspberries.  The rhubarb stalks are huge and ready to be picked immediately.  Done.  I clean up - raking, pulling up weeds, getting it all set for planting.  I thought I would have to give this up this year, but now I try to keep it going.  I make a simple plan with mostly tomatoes. 

I weed another flower bed.  We have a bunch of these beds all over the yard in stragetic spots on our 1.5 acres.

I have food for dinner tonight but Mike's parents go to Uncle Chris in Trumbull.  Mike has 3 meetings so no dinner here.

That is fine.  I get to walk with my dear friend, Kathy, in the woods with her two Goldens - Jack and Frost.

Thomas comes by and brings the twin bed back with loads of bedding.  They want to use the extra bedroom in their cabin for an office.  They never have guests over anyway.  I happily do more laundry!  Yes!  We put the bed parts in the hold below the tenant's apartment and...

I am happy, happy, happy!

"The Kayla" - Tuesday, May 24, 2011 - "Marcy's Birthday"

Kayla Quote:  "Don't let her know I am coming.  I want to surprise her." - Kayla, when she heard Janelle was downstairs getting a heart biopsy.  Kayla wanted to go downstairs to see her in the recovery room.

Short Synopsis:  Kayla was surprisingly perky today.  It was due to the fact that her dear friend, Janelle, the one who has had her heart transplant for nearly 23 years, was downstairs in the catherization lab, getting a heart biopsy.

Kayla had a great session of physical therapy with her therapist named David.  She did laps around the hospital hallway.  Sometimes the therapist would stop Kayla and check her oxygen level by putting a white pulsator clip on her finger to see if it registered 100%.  Kayla gets winded but things are progressing.  At the bedside, they turned down her oxygen from 100% to 40%.  This is piped in through her trach to help her lungs.

Two young pain specialists came to analyze her pain medications.  They liked what was being done and they felt the management was correct.  Kayla wants extra medicines in case of extreme pain and they told her no.  She got irritated with me when I asked about alternative therapies.  The specialists then became arrogant and said all of those therapies are "not evidence-based."  They informed me that there is no department in the hospital which deals with this.  This I know first hand - when you call a phone number that was given to us, no one answers.

It is obvious to me that they don't have a clue what kinds of pain patients go through.  There they are standing, younthful, exuberant, physically top notch and  in no pain!  No open minds either!  Closed off, yet so young!!

I told them that top hospitals are now coming on board with new departments trying to find new solutions to pain.  Did they see all the latest articles out in the press?  No, they did not.  I told them venerable institutions like Stanford and Sloane Kettering and Hartford Hospital are all considering new thinking in these areas.  I guess I have to xerox articles for them to read.

All they do is pooh-pooh.

I would like them to sit in Kayla's body for just one day when she has extreme pain!  Just one hour of extreme pain!

Then I could stuff the arrogance right back down their stupid throats!

Long Story:  Today would have been my sister Marcy's 48th birthday.  She died at the age of 24.  She has been gone as long as she was alive.  We never forget her, ever.  She is the first one to die in our family, the fifth born, and we all were devastated, but time marches on and the earth is for the living.  For me now, it is for what I can accomplish here before it is my turn to go.  I would like to increase organ donation awareness and help increase the number of donor hearts for the 3-4,000 patients across the United States at this very minute who need a heart to survive.

Kayla needs a heart as soon as possible - so do others.  If I could save a bunch of lives, I would feel I have done something great for the world.  I know it keeps getting better and better how these transplants work.

I arrive at the hospital to see Bob at the front entrance.  He gives me a big hug and tells me that Beth and Steve's mom has a blood clot in her heart, which she got at 3 a.m.  

"She looks bad," he says.

I know this pioneer 80-year-old woman is a gift to this earth.  She has allowed them to use her as a guinea pig all along for hearts and she is a survivor.  I watch her in amazement.  I think she will be with us for more time.  I feel it.  I hope.

Chalkboard messages:

Steph:

"Fink?  Me?  Sorry was so tired.  Still am - Hope all is well!  Love to you and Kayla.  Bob is here."

Beth

Beth:

Bob told me.  Prayers for you and your Mom.

Love you,

Stephanie

5/24   11 a.m.

Steph:

Thanks.

Beth

Beth:

Kayls is doing great.  I love you Beth."

Steph

5/24  3:30 p.m.

Ross and Walter pop by to meet Kayla.  Walter was here for a check-up on his valve surgery.  He is a flight technician and has to take a couple of months off.   He cannot lift any weights as he gains strength.  His chest was totally opened for the surgery so it takes time to heal.

As we walk to Kayla's room, Walter says,

"I have been feeling a lot stronger this week."

"Oh, like a break through..."

"Yes," he answers.

Ross stays for only a few minutes.  It is obvious he has much on his mind.  He is on his way to San Diego to rent his apartment there and come back to live here in New York.  He has a lot of details to tend to but let's us know he will be back in a few days.

I want to go and see the baby hawk with him!  He clearly likes to walk and walk for blocks - my kind of person!  The hawk lives near his home down on the bottom of the island.

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

Email to my many friends from high school and beyond:

Sent:  May 23, 2011 8:11 a.m.
From:  Stephanie
Re:  My daughter Kayla's journey


Hello All:


My daughter Kayla had a cardiac arrest April 1.  Amazingly, Columbia Hospital in NYC save her - 5 surgeries later she is still alive and progressing forward.  She has a special mechanical device which keeps her heart going as she waits for a second heart transplant.  Her transplanted heart, which lasted nearly 12 years, will no longer support her body in any way.


I started a blog about 4 weeks ago and it's beginning to be read around the world.  I do a post every day - this is natural for me, as I am an author and also natural for me, because more importantly, I am a mother trying to save her child.


A current story, it unfolds every day.  There are many subplots alongside my daughter's main story.  The internet is incredible - the blog has gotten over 3,500 hits in a month's time with no promotion.  Now I am letting everyone know it is out there.  It's a local story with lots of Tarrytown, N.Y in it and lots of Ridgefield, Conn. as well.


Please become "followers" to help the cause of organ donation as I go out and seek support from all kinds of places.  You can save lives and help my daughter get a heart, the hardest part of her journey.  If you could pass this email along to your friends, I would appreciate it.


Thank you.

Stephanie

http://stephanieeasyspeaks.blogspot.com


114,000 people across the United States are waiting for organs.  Nearly 90,000 are waiting for kidneys but over 3,000 are waiting for hearts.  One organ donor can save 8 lives.  Kayla, who is now 26, is on an adult candidate list with over 200 people waiting for hearts.  The wait time for her is 1 to 1.5 years.  She may not make it in time to get her new heart.  Please consider organ donation.  Thank you.


Monday, May 23, 2011  11:27:48 a.m.
Stephanie - Thank you for this update, and know that I think of you and Kayla much more than you know.  I will definitely follow your journeys on your blog.  My best to you and Kayla - 
L, Lydia (Sampson)


Monday, May 23, 2011 10:17:09 p.m.
Stephanie:  Every since you mentioned Kayla's failing heart to me last fall, I have been thinking of her and your family, praying for strength  until the right solution can be found.  Sounds like you are on a path, albeit a painful and trying one.  Thank you for the blog; I backed it up and started at the beginning because I was trying to discover, how did this happen?  Now I understand that it was only a matter of time.  God clearly has Kayla in the palm of His hand...otherwise she wouldn't have been in the operating room in a renowned hospital with fantastic doctors.  And not as casual but ready to put their knowledge and skills to work.
I'm on April 15th and look forward to picking up tomorrow the continuing saga of The Kayla.  I will definitely forward your blog site to friends, and encourage them to remember there is no more life affirming action than participating in organ donation.
You, your family, and of course, Kayla, will be in my heart daily.  Keep up your strength, my friend, and that smile on your face.
Love, Katie (Harriss)





Monday, May 23, 2011 10:31:21 p.m.
Stephanie, my heart and prayers go out to you, Kayla and all your family.  There is a wonderful heart coming her way soon and she will survive to bring joy and love to many others.  God Bless you all, Rich (Palermo)

Tuesday, May 24, 2011  9:56:08 p.m.
Stephanie, Will save this message.  Read the blog.  Meadow  Hooray for Arlene.  Some of us are great to start with and actually get better over time.  Will pray and keep my ears open for donors.  Richard's niece used to work with transplants as a nurse.  Will forward.
Sheila (Brady)


Thursday, May 26, 2011  7:45:30 p.m.
Hi Steph:  Kayla's struggle really puts things in perspective.  She is really an inspiration to me.  While I'm pretty religious, I can't figure how God let's a young girl go through such agony.  But she will perservere.  My prayers are with her.   
Jimmy (Sabo)


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

Text to Kayla:  Where is Pip?


Text back:  "I don't know!"

"A wave of panic swept through the chat room as speculation swirled that Pip had tumbled from the 12th floor lefge upon which the nest sits.  We were inundated with e-mails with the subject line "Where's Pip?"

We switched cameras to one with a higher, wider angle.  Sure enough, there was Pip, on the ledge to the left of the nest peering up at Mom.  Reader Jeff Folmsbee captured the great video (one minute) of Pip flapping his or her wings a bunch of times, then deciding to cut short the mornings's adventure and climb back up to the nest." - New York Times - Andy Newman and Emily S. Rueb 5/24/11

Reader's Comments:

Riley, NYC  5/24/11  12:49 p.m.
I can hardly believe that this is true, but it is unless my eyes failed me.  I saw Pops actually deliver 2 strong beak blows to one of the unhatched eggs.  The result was a large hole in the egg.  Did anyone else see it?

Michael, White Plains, 5/24/11  6:44 p.m.
This is continuously entertaining.  I just watched Violet and Pip dispatch an entire pigeon.  Or what looked like it might have at one time been a pigeon.  Took them about ten minutes....have watched them having many a meal, with Violet tearing off every-growing chunks to feed Pip.

MJH, Washington, D.C.  5/24/11  6:44 p.m.
Thanks so much for the web cam.  Our family is totally hooked!!  And Andy - thanks for getting the angle changed on the camera today so that we could all  see Pip's first walk!   Thanks to you - we have learned so much - and gained appreciation for this beautiful family and all birds in general.

Binnebrook, New Paltz  5/24/11   5:36 p.m.
(After eating the pigeon)  Now Pip is face down in the nest, sleeping it off.  Reminds me of that old Alka-Seltzer commercial:  "I can't believe I ate the whole thing..."  -- You ate it Ralph!"

LE, NYC  5/25/11  11:50 a.m.
I actually saw when Bobby brought home the bird that was consumed.  It was very worrisome that he hadn't appeared for days and someone posted that they read on some other blog that he died from a poisoned rat.  When I finally saw both Bobby and Violet with Pip, I sighed a huge relief.  I confess, I will be heartbroken when Pip fledges and all leave the nest.  I have thoroughly enjoyed our community of "watchers!"

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


Janelle has got to be one of the most beautiful souls I have ever met.  She and Kayla have the most blessed friendship, born out of understanding how the other feels with a transplanted heart.  They are a few months apart in age and very different in personality.

Janell's biopsy went very well downstairs.  One of her coronaries is 50% blocked but the good news is that it has not changed since January.  GREAT!

When I go down to visit on the 2nd floor where the catheter lab is, Janelle is sitting up in Bed 8, eating a sandwich.  She wants to get to Kayla as bad as Kayla wants to get to her!

This recovery center is the fantastic - the whole cath lab is.  It's all part of the new building which was completed one year ago, called the Vivian and Seymour Heart Center.  State-of-the-art, it's one of the best heart centers in the world.  

The two buildings lead into one another.  You know you are in the new one as the floor color changes from tan to light white beige.  All is polished to a shiny spiffiness and glitters.  This is where Milstein Building ends and the Heart Center begins.  I like how they connect buildings together in New York City.

Kayla is too tired to go down but Janelle comes up...

"The Kayla" - Monday, May 23, 2011 - "Not The Best Day"

Kayla Quote:  "When I go home, do I go with the VADS?" - Kayla on hearing that she will be released soon, maybe in 2 weeks time to go home to wait for a donor heart

"Hi, my name is Stefanie and I became friends with Kayla through my fiance, Casey McKee.  They went to school together.  You and I were introduced once when I came to your house to hang out with Kayla.  Kayla really is the nicest person I have ever met...I don't think she has a mean bone in her body.  Casey and I would really like to send flowers but I don't know where to send them.  Could I have an address or a place to send them to?  Also, please don't tell Kayla, I would like for it to be a surprise!  Thank you!"  Stef & Casey, Facebook message to me, 5/23

Stef crocheted the most beautiful hot pink scarf and sent it from Florida.  How did she know Kayla loves pink!?  Kayla will look stylish in the winter with that scarf!  

Short Synopsis:  Kayla was in such pain yesterday that she required more medicine.  The four 1-inch canulars which lead into her body are a source of great pain.  It may take months before it is under control.

When I saw Mike this morning after his visit with her last night, he informed me that she was finally out of pain.  They had given her a final dosing of dilaudid.  When I saw her the day before, she had already gotten methadone, oxycodone, intravenous dilaudid and then more dilaudid.

"She was high, but she was out of pain." Mike tells me.

The nurse practitioner was rushing too much and accidentally yanked Kayla's line leading into her chest.  This is what initially caused her pain and it was downhill from there.

We can all stand around "the Kayla" and say how she should bear the pain and use fewer narcotics.  I dare anyone to be in her shoes and believe that!

We are constantly searching for other methods to reduce her pain - alternative methods like hypnotism and MBSR - Mindfulness-Based Stress Reduction, Massages, Reiki, Yoga, something!  There is a big pain renaissance and Time Magazine had a cover story on the pain management subject earlier this year - over 20 pages of reporting!  In the coming years, great strides will be made to help patients with pain.  Kayla is not the only one with insistent, chronic pain.

Long Story:  Today was the start of the learning process - we caretakers have to learn how to handle dressing changes at the tube sites and also how to handle the ventricular device.  Kayla may be going home.  Everyone is working on a plan for discharge.  There were tough moments with all of this so I cried.  Kayla cried too. 

When I arrived in the morning, Kayla could not tell me what the lung doctor had said.  She is a late sleeper so morning time is not her best time.  The doctor probably spoke with her, not even realizing that she was awake with eyes open, but asleep with her brain.  No matter!

We began the device training but it was overwhelming.  I was too tired to be of any use.  Two months of a constant vigil is now beginning to take its toll on me.   Yesterday's hard day made for a wasted day today.  I sometimes have trouble replenishing.  After learning the basics, I said "No more today.  Tomorrow we can begin again."


My absolute-gem-of-a-mother shows up when days are bad.  Today she came from noon to 4 p.m.  Her advice was to get a lawyer and keep Kayla in the hospital until she gets a heart.  This was in response to my saying that I was a one-person-show and was not a 24-hour-nurse.


Here at the hospital there are teams of experts, all in different fields - cardiology, infectious diseases, psychiatry, sociology, transplant cardiology, surgery, nursing, pain specialists, labs, x-ray technicians, scan technicians, housekeeping, nurse's aides, dieticians, etc...  You get the picture!?  "The Kayla" is taken care of by scores of people, teams of specialists.


Certain things have to be in place or I cannot take Kayla home safely.  We will be given the Thoratec PVAD heart pumping machine which keeps her blood flowing properly through her body.  We will also be given a back-up machine.  Also, two blue bulbs in case both machines fail and we have to hand pump her blood with a bulb in each hand (looks like a turkey baster) - one and two, one and two, at the mimic heart rate of 80 per minute.  We also will be given 6-8 batteries for power, when it is not plugged in and she is moving about.  Also included will be a battery recharger machine.


Kayla wants to go home so badly.  She wants to see her cats and sleep in her own bed.  She is tired of the hospital.  It's been almost 2 months now!


Overall, she is doing really well...


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


Kayla is sitting in her bed and feeling much better today.  Her cheeks are rosy.  I like that.


Mom is ready to tell stories - I like that too!


Somehow we get on the topic of me in high school and race riots.  Did I remember the race riots in school?  

Of course not.  

Only thing I remember is how much tension there was and how I could no longer talk to Regina Miller, even though we were very good friends with her mother, Blanche.  I remember seeing long, lithe Regina walking the halls in anger with a huge afro on the top of her head, her black eyes boring into me.  She was intimidating.  We would pass by each other and stay as far away as possible from one another.  I was absolutely scared of her.


When I was young, Ike Blanchard, Sr. used to come to our house at 182 Crest Drive and do just about anything as our handyman.  Josephine, his wife, did cleaning, twice a week.  We loved our Josephine.  I was happy as a little clam when they came.  Ike did painting a lot and he always included me in all of his projects.  I was 10 and he was painting my parent's room.  I was allowed to participate and I got lots of paint in my hair because I leaned over and pressed against the wet paint on the wall.  Patient Ike,  laughing, wiped it all out with turpentine.  There really wasn't any water-based paint in the 1960s.   I would do anything to get those minutes back, me and Ike, painting.


Mom says that there was a bad race riot and the agitated Ike came to our house, saying,


"Jacy, they are rioting down at the school.  Our kids are not safe!"  Everyone was nervous but Ike told Jacy,


"Don't worry.  I'll go and get them all.  I'll do it."  Down he went in his car to retrieve us.  Mom says he came back with Mom's kids and his kids.  Now I am just guessing but I think it would have been me and Cynthia, the white ones and Rene and Doreen, the black ones.  Geez...at least Regina was not in the car!


We were safe.


"I have absolutely no recollection at all Mom, not even a bit." I tell her.


"You were all annoyed because you were having fun watching it all," she tells me.


Mom continues.  When Ike was a child it was the depression and no one had anything - now she is spinning back to the 1930s.  Ike used to deliver newspapers to people in town and one of his customers was the Warners.  Now they had a lot of money - the library is named after them and a street is too.  Ike was their delivery boy for their newspaper.  So one holiday, they gave him a really incredible tip - a $10.00 bill.  This was a king's ransom.  Ike was thrilled and he began to tell everyone along the way home that he had this amazing bill.  By the time he got home, his father had already heard the news.  As he stepped inside the front door to his home, his dad said,


"Hand that bill over to me, son."


Ike laughs when he tells this story.  He wistfully thinks of what he could have had with that bill.


Kayla says, "That's not fair.  That was his money."


"But it was the depression I tell her.  No one had any money for food.  I am sure that father used that money for food for the family."
                                  - - - - - - - - - - - - - - - - - - - 


I wonder whatever happened to Rene Blanchard.  She was my peer and a lovely gal, very quiet, a good person.  Last time I heard anything about her, she was married to a serviceman and in Germany but that was many, many years ago.


Nancy Blanchard was Josephine's identical twin sister.  She died a bunch of years ago.  Is Ike Senior still alive, I ask Mom?  I think so.  I could call Josephine and get a run down on where everyone is.  She still lives down by the river there, not in Franklin Courts, but in a place nearby...


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


I have not seen the foxes in weeks.  Alice tells me that Mama fox had one pup that kept following her when she went out on her nightly hunts.  Mama fox would leave the pups in the den and go to find food but this little one insisted on going with her.  It did not come back.

"A goner," laments Alice.


The last I saw of them, there were only two left out of the original four pups...


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


I am tired and there is a lot of sad weight on my heart.  My Kayla is suffering but she keeps on surviving.  God is tough on her and I cannot save her.  I can only give her love, the special things she likes and hope that a new heart comes.  

The new heart pump is a great bridge to transplantation as organs are very hard to get.  


We will go home soon and sit and wait...

"The Kayla" - Sunday, May 22, 2011 - "John Blakeman - the Red-tailed Hawk Expert"

Kayla Quote:                           Texting conversation

             Kayla:  "Hey Madre, r u coming by 2day?"  May 22,  12:26 p.m.
                       
             Steph:  "Yes, coming from New Jersey now in a little while."  May 22   12:30 p.m.

             Kayla:  "kk cya soon the muracas r here :) could i have a collata again??? : D   May 22 1:03 p.m.

             Steph:  Absolutely my little muffin...coming right up.   May 22, 1:06 p.m.

             Kayla:   "almost here?"  May 22, 1:29 p.m.

            Steph:   "Traffico...be there soon."   May 22,  1:45 p.m.

Short Synopsis:  Kayla is really beginning to know what she wants and needs.  Almost daily she texts what items she needs at the hospital, especially special drinks and foods.  She hates the hospital food, only plucking bits and pieces from the tray for me, like a container of apple sauce or a yoghurt, which she knows I like.  I used to eat her hospital food but even I am finding it unappetizing.

When I get there, the nurse practitioner says tomorrow will be a busy day for Kayla.  The weekends are quieter with a reduced staff.  Kayla does not get physical therapy on the weekends.

The plan is set forth:

1.  Pain specialists - Kayla is in pain all the time from the cannulars leading into her body.  Sometimes it is unbearable.  She needs specialists who can help her with this seemingly unsolvable problem.  The methadone is definitely helping and the other narcotics are being decreased but she still has pain.  Cardiology and the other doctor teams need to be on the same page with the medications.  An evaluation is needed.

2.  Her trach tube can go from a size 6 to size 4 to close up the hole in her throat.  Things are progressing well here.

3.  Physical therapy and occupational therapy will resume Monday.

Long Story:  Bumpy was wonderful this morning, making cheese eggs for the three of us - me, Robert and Bumpy.  Robert has come in second in the men's doubles and clearly he is not satisfied.  I can tell by his face and eyes.  He says nothing.

"Second is great."  He still says nothing.

Bumpy and I go off for another long walk and it's wet out.  She points out the endless stream of chipmunks dashing in and out of stone walls and lawn holes.  This clearly is a place where they thrive because we are surprised them every few seconds - little ones, big ones, dashing-across-the-quiet-street ones.  Their tails are sticking straight up.

Mordechai calls me in the middle of all this and I am walking briskly.  As he speaks, I am breathing heavily. We are going at a good clip.

Mordechai informs, "My mother is off the respirator for three days now."

"Wow, that's great."

"Takayama won't do surgery.  They say we need to find a long term facility for her now," he continues.

"I understand that.  There are loads of people downstairs in the emergency room waiting to come up.  People who are given chances to survive.  Those ICU beds are in high demand.  Your Mom's heart is strong, like an athletes, that's why she's still here.  The only concern I have is that she is not moving.  She will get bed sores with no physical therapy.  You know, someone should move her arms and legs."

Mordechai says they are searching for a facility to move her to.  He politely says he will let me get back to my exercise after he asks about Kayla.

Bumpy and I find Robert mowing the lawn when we get back.

His wife Carol will be home soon from the Girl Scout weekend trip.

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

I get another skim coffee coolata at an even closer and cleaner Dunkin' Donuts before the George Washington Bridge...

I bring it to Kayla and go down to the fifth floor waiting room to write chalk board messages.  Now I am truly cleaning out.  The roses I bought on the street to brighten up the place are all withered.  I throw them in the garbage.

There are people in the next cubicle away from our cozy corner, a very large family.  They took all of our chairs and moved them over.  Our corner is totally empty!

From:  Steve
To:  Stephanie
Sent:  Thu, May 19, 2011  11:03:48 AM
Stephanie:
So glad to get your note and to hear Kayla's doing so well.  Please pass along a brass-band HAPPY BIRTHDAY from me, complete with tuba, trombones and drums.  I'd suggest fireworks too, but that might not be a good idea given the way they leave oxygen tanks lying around the hospital.  Hope you're planning a cake with the GW Bridge on it.

I've been in daily touch with Beth, keep tabs on how both she and mom are faring.  I'm coming up again Friday night by train.  I don't know if I'll make it into the unit then, but I'll be there all day Saturday (leaving Sat. nite).

My daughter Molly....is also coming to see grandma, so we'll all be there in force...I'd love for Molly to meet Kayla too, if she's in the mood for 15-year-old company.

I'm fuly back at work, with a story in this morning's paper.  My editors are reaping their revenge on me for being out so long, demanding to see my byline in the paper.  It drives me them a little crazy that I'm so hard to intimidate.  Ah well...it's long past time they learned.

I am long overdue for a note to Mordechai and Dovid.  I'm hoping to get to them today, if I can.

Sorry to hear our little nook has been invaded by newcomers, but it was inevitable.  I wonder who came before us?

Much love to you all,

Steve

From:  Stephanie
To: Steve
Date: Sun, May 22, 2011  9:24:44 AM

Steve:

Oh geez...did I miss you?  You and Beth never even called me!  Kayla would have loved seeing a 15-year-old.  She was lonely yesterday...not enough people coming by and we had a big 40th party for my sister Deirdre, so I left early to go.

Deirdre's husband, Ty, is the most amazing cook and party giver.  He does all the work himself and then sits back and watches people enjoy themselves.  He is a treasure for our family.

By 10:30 p.m. my best childhood friend, Bumpy, and I left the Tarrytown party to go to her brother's house in New Jersey.  I went immediatley to bed - getting old is not easy.  The 40-somethings kept that Tarrytown party going until 2:30 in the morning...long gone are those days for me.  As we were leaving, they were back out in the courtyard laughing and telling storeis, and I was disappointed in not being able to keep my eyes open.

I like to to go bed early and get up early to write for hours.  Best writing time is probably between 5 a.m. and 9 a.m.  I should call those reverers and show them the light of day!  Ha!

Mordechai and Dovid would have been amused by what I did in my new 7th floor waiting room...and no, there is no cozy corner there.  I saw a young bored Orthodox Jewish boy sitting there.  He was wearing the exact same clothes that they wear.  He was probably 15-16.  He picked up the Time Magazine (that I left there in a basket with loads of Kayla's entertaiment mags) that had Osama bin Laden's cover story.  It's an amazing story with good detail coverage.  (I was working on a blog posting in an opposite chair to this boy and he was reading that article.)  I waited.  The boy settled in with comfort, lying down, hand behind the back of his neck, and he read the entire story.  He looked at every picture and flipped the pages to study every part.

Then I...yes, I told him "how could anyone be so evil" etc...  The boy never said a word to me, not a single word, but he was was interested in what I had to say.  So bright-eyed, intelligent...

Hope all is going well with your Mom and I hope to see you soon.

Regards,
Stephanie

Chalkboard:

Beth - You fink!  You didn't call me when Steve came to town.  Hope your Mom is doing well.  Kayla great. Steph

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

John Blakeman, the red-tailed hawk expert.  My new guru!

Ok, there is running commentary on the sidebar at the Hawk cam for Pip.  People question John about all aspects of red-tails and about Pip.  When John comes in and begins to speak, I am excited to watch what is being said.  When he leaves, it's just a bunch of young kids fooling around.  After a short while, it drops off.  I definitely drop out if John is not commenting.

They say Pip has only a 20% chance of making it through his first year.  I don't like this statistic much but I know nature is cruel - just look at my Kayla and her struggle to survive.  Born with a bad heart, she has wrestled with trying to stay here. 

I say Pip has a better chance than the predictions.  He is an only sibling with the two devoid eggs next to him.  He gets all the food and all the attention of his parents.  He is growing faster than anything I have ever seen.  He is 20x the size of one of those eggs and he's, what, 2 weeks and 2 days old?  By 5 weeks, he will fly out of the nest for the very first time.  He has to learn how to fly well and how to hunt.  Lots to learn!  But he is pre-programmed for all of this and he is hardy, plump, and willing!

According to John, Violet will spend less time on the nest and will begin to sleep in nearby trees and resume a more normal hawk life.  Pip doesn't seem to know this as he cuddles and nestles under her.  Bobbie continues to get food for both Violet and Pip.  John comments that in New York City where the food supply for hawks is plentiful, there are generally 3 eggs in the nest.  In rural areas there is usually only one egg due to less food.

There is one half a rat next to the sleeping Pip.  The tail and back end from the mid-section down to the stretched out feet are all you see.  And no, you cannot see gore.  It's an illusion - you have to study it carefully to see that the front half is gone.  It's just stored food in the pantry part of the nest.

Pip is one big ball of white fluff and all wings.  Once in a while he stetches them out in his afternoon snooze.

First time nesters are generally 3-6 years of age.  Violet was banded at the Delaware Water Gap - the band can be read from the window and it has the date 10/2006 and a specific number.  It is believed she is around 5-years-old.  The band is not bothering her or she would have died years ago.

Red-tails get bitten by their prey sometimes as they attempt to get them.  It is believed that Violet was bitten by a squirrel as they can see the leg scars.  The band was probably pushed up by injured scar tissue.

All banders report their bandings to the US Forrestry and Wildlife Service Bird Banding Lab and the records are stored on computers.

It is 4 p.m.  Pip is sitting contentedly.  Violet has left for a long time but now she is back preening him, picking at his feathers, maybe biting bugs off of him...