"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

 
 

 




 

 



 






















































 




















 






































  

"The Kayla" - Thursday, June 2, 2011 - "Pressure is on!"

Kayla Quote: "May good fortune find your doorway.  May no trouble travel your way." Unknown

Short Synopsis:  There is a load of pressure to get Kayla out of the hospital and lots of detail to work out to release her.  They always need hospital beds for those who are sicker and waiting in the emergency room below on a lower floor.  The patients are in beds along a hallway when things get crowded and there is never enough room.  Kayla is stable so it's time to let her go home.  Someone else can have her beautiful single room with the incredible view of the Hudson River and George Washington Bridge.

Long Story:    The psychiatrist called me and said we needed a good plan before Kayla would be released to go home.  Kayla likes Dr. Marotta, a local psychiatrist, who comes highly recommended.  She wants to go see him on a regular basis but she was sidelined by her cardiac arrest April 1.  She has been in the hospital for just over 2 months, soon to be discharged.

We need someone long-term who can help Kayla with her panic anxiety disorder and depression; her inability to listen to others and help herself; her pain management without loads of narcotics (she is in chronic pain with her back muscles and shoulders caused by stress and pain at her cannular sites).  We have a "pain journal" at home which documents when she takes narcotics for her pain.  Narcotics are addicting but very necessary.

Dr. Rocco Marotta is considered the best in the area but he is near retirement and is not taking on new patients so Kayla may not get in with him.  Still he has been very helpful.  He treats patients at Silver Hill in New Canaan, a private psychiatric facility.

After speaking to the Columbia psychiatrist, I put together all the names and phone numbers of the team who will assist Kayla when she gets home.  Dr. Farhana Latif is at the head of the team - she is the Columbia transplant cardiologist and excellent.  She never "considers failing" -  her words working constantly to bring the good life to Kayla.  She says that Kayla is young and will do well.  Dr. Marotta is the psychiatrist.  Dr. Wirz is the local neurologist to help with treatment for Kayla's migraine headaches, which are difficult to treat, as Columbia will not give permission for most of the medicinal treatments considered by her.  For the moment, Kayla is limited to botox injections in her shoulder and neck which gives temporary relief.  Next on the team is the psychiatrist from Columbia and finally there is Mike and me.  Of course we cannot forget the EMT team from the fire department in Ridgefield and all the fire departments along the highway corridor leading down to New York City.  Each will get an alert sheet regarding Kayla and her dependence on the ventricular assist device.

I have my own list of questions which I convey to Rosie.  Kayla is complaining chiefly of focusing problems which have gotten worse since this hospitalization.  Neuro evaluation?  What about the flinching and shaking in her sleep?  What is that?  Her feet are swolen and they turn black at times and then pink.  What is that?  Have they done any recent echos to check her heart function?  Am sure they have but what are the results?  Does she need lasix or is she fine without it?

When I arrive, Kayla tells me that at midnight, the nurse "yanked" her final chest tubes out as they are no longer needed.  In the beginning, they run very red from the excess blood escaping and then as the days go by they run clear.  Then they are tied off and pulled out but it's a physical process to actually pull them out.  It can hurt and did!  The nurse could have been a little more gentle and now it's sore.  Poor Kayla!  And her feet are swollen!

Still, she happily signs in on her laptop to watch Pip and all his shenatigans with his parent birds.  She signs in to the comments section as "Shake Your Tail Feathers,"  her pseudo name.  Sometimes when she is feeling poorly, I go in and talk as "Shake," but I always say "I am Shake Your Tail Feather's Mom."  There are many people out there who are enjoying watching Pip grow.  Many times there are over a 1,000 viewers watching at once.  The counter says so!

I bring Kayla's favorite sandwich - a caprese from Parma Deli.  It is toasted to perfection - French bread with sliced red tomato, basil leaves, mozarella cheese and balsalmic vinegar.  Tasty and always uplifting for the muffin!  She shows me the bandaid she wears on the closed trach hole in her neck.

There is more happiness here.  My Mom and sister Valerie visit and Kayla loves family.  She thrives on people and forgets her problems...

                             -------------------------------
 Violet is doing her own planning in her bird nest.  Her offspring, Pip, is getting to be almost as big as she is, extremely demanding and the parent birds are exhausted.  Pip and Mama cuddle - wow, that is sweet.  Two hawks cuddling.  Pip spends all her time stretching her long wings, out and in, out and in and she is knocking her mother with them.  Mom looks befuddled and the nest is too small.  Pip has mostly adult black feathers with tufts of white fluff between.  These wings are not ready to fly.

I go home and plant colorful flowers in Thomas's flower bed at his cabin.  I put in some white ones too, his favorite. I weed...