"The Kayla" - Friday, May 27, 2011 - "So Much Pain"

Kayla Quote:  "No one has come in for one hour.  No one comes.  Please help me!" - Kayla, in terrible pain calling her parents from the hospital

Short Synopsis:  Kayla has terrible pain with the canulas.  There seems to be no relief.  That's it in a nutshell.

Long Story:  These days are exhausting.  There is no relief.  When your child is in pain, you are in pain.  Kayla and I are fighting a lot, but as I drove home last night, I decided to try and find some optimism.  I texted her from my car.  I can text and drive at the same time.  It is dangerous, but I cannot help it.  I need to tell her I love her.  If I have too much to say, I pull over to the side of the road.  Most of the time,  I can time it to text at red stop lights or during traffic jams.  When the beep sounds from my cell phone that someone has texted me, I can't resist to see who is talking to me.   It brings happiness to text to someone you care about.  Texting creates intimacy.

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Texting!

Stephanie:  Am happy your trach is out.  I brought you special foods - made a tuna with carrots and tomatoes over lettuce - little balsamic dressing and lots of fresh fruit - green grapes (really yummy!), strawberries and a green apple all in hospital fridge - hope you enjoy.  I love you - Mom  8:49 p.m.
Kayla:  Thanks Mom - thanks for helping me out so much   10:36 p.m
Stephanie:  You're a beautiful daughter - I feel blessed to have you in my life.  12:29 a.m.
(while in transit home)
Kayla:  Thanks Mom - I love u -  P.S. - could you bring those zip lock bags back?  Thanks <3 12:45 a.m.
Stephanie:  You need some?  OK  12:53 a.m.
Kayla:  & colgate wisps (comes in handy a lot!!) plain goldfish (non-cheesy...just plain)...new lemon ices & multipack of cereals (mini boxes...same thing Dad got me)...would be veryyyy appreciative!!  Thanks Madre!  12:57 a.m.
Stephanie:  Will try to get the stuff you want but hard to transport lemon ices - is there a freezer on the floor?  1:18 a.m.
Kayla:  o0o ya...damn it!  Ok no lemon ices but can u get a small skim milk coffee coolata when u r close to the hospital?  1:20 a.m.
Stephanie:  You are awake?  I sang and danced at Ritz Asia with my karoke crowd while Dad, Grandma and Grandpa went to the gym - it was very sweet.  I was so happy singing duets with different people.  
1:24 a.m.
Stephanie:  Night night!   1:25 a.m.
Kayla:  That's great.  I'm glad u found something that truly makes u happy.   1:27 a.m.
Stephanie:  It's great exercise too!  I drank 2 cokes and it cost $5.30 for them - cheap night of entertainment :)   1:28 a.m.
Kayla:  All cats r inside??  I hope  1:28 a.m.
Stephanie:  Yes now that the Mooms is in!  (She ran up after me when I returned from karoke, meowing!)  1:29 a.m.
Kayla:  That's a rip off for soda.  1:29 a.m.
Kayla:  Rheuy is in rite?  1:30 a.m.

Stephanie:  Cats are eating crunch cat food at your closed door!  Moo and Babee in my room - Rheu in living room  1:30 a.m.

Stephanie:  Not at a bar - that's $2.15 per soda - I've been at bars where it can be a lot more!
1:32 a.m.
Kayla:  Kk good - have a good nite nite madre  <3 1:32 a.m.
Stephanie:  Nite...zzzzzz  1:33 a.m.

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Ok, so I need a break.  Today was very hot and my solace is my garden.   I am alone and in peace in the sun when out in the beloved garden.  There is plenty to do in the Spring and early summer to get it up to snuff and then you can enjoy it and give "garden tours" when it all grows.  The mix of sun and rain has been perfect and one of the best parts is watching it grow.

This morning I weed the the bed next to the patio and stack all the sticks that Thomas has chopped up with a small hatchet over the past several weeks.  We are still processing the large maple tree bit by bit.  This is all in preparation for next winter's heating of his cabin.  Can't wait to see how much money he will save over there with the wood burning stove.  I weed the bed by the next patio also.  Wow - it all looks beautiful.  It is sweltering and I am dripping and it feels great to drip and then go take a nice long hot shower.

I make many calls for Kayla's medical bills - lots and lots of calls.  I am now her personal assistant with all that I do for her.   I wish I could work to help reduce all of our debt but that will happen soon enough if we could only get a new heart for her.  If only....

Kayla is our top priority, more important than work at this present moment.  The team of Michael, Kayla, Thomas and me - that's what is working.  That is why she is still alive and making it.  Kayla is strong and full of wanting to survive.  We are smart and full of the right support.  She takes her medicines on time.  She follows the doctor's orders.

I now dose all three cats with Frontline to keep the ticks off of them and us.  We are the "tick capital" of the world.  Ridgefield has more deer than any other part of the state and we have a lot of people who get Lyme disease here.  I get bitten all the time.  Rheu and Mooms are easy to apply the substance to. They hang out in the garden with me and keep me company.

But the Babeee??  I chase him all over the yard.  I finally had to outsmart him.  I get the dry cat food and shake it.  He loves to eat more than the other two cats - he is the biggest at 14 pounds.  He comes running.  I capture him and wallah!  Hold him down and apply!

Charlie calls and I apologize for being so weepy the previous day.

Charlie says, "That's ok.  I have good shoulders to lean on."  Charlie is one of God's most beautiful creations.  He gives nothing but love, homemade chicken soup and help when others need it.  I have yet to find a way to pay back this dear family friend.  Kayla and I think about how we can re-pay him.  We have not figured it out yet.  Charlie has two daughters who are just as beautiful as he is.

We talk about Kayla's car.  She will not be able to drive as long as she has the ventricular device.  It could be 6 months, a year before we get her much needed heart and the device is taken out.  Her car is a 1997 Honda Civic, which is in high demand.  Everyone loves the Japanese cars.  They are reliable and run and run and run.  But years ago, someone at a bar where she was got annoyed and in the parking lot put little bashes in the side of it all down one side.  This has devalued it.  Over the years, Charlie, our family mechanic, has kept the engine in great shape.

Charlie is interested in buying a car for his daughter, Robin.  She is in a truck that uses a lot of gas.  Kayla's car has this great engine but the body is now "fair."  Maybe Robin could go and get a small loan and make payments, I suggest. 

The motivation is there to totally clean out the car.  The interior is beautiful when it is vacuumed.  It is surprising how many CD discs of music she has.  They fill up several bags and I put them in my car in the back on the floor.  I plan to play each one to enjoy and learn more about music as Kayla continues to be in the hospital.  Kayla has collected music for years.  When she was in junior high school, and had gone to a party, she had a very large collection that was stolen.  It was disheartening but she got over it and began to rebuild her collection.

 I am being given this day as a break!  Wowzers!  Pops and Lori (good ol' grandparents, that they are) have offered to go back into Manhattan and visit Kayla so I can have a day of rest.  After they see her, they plan to go to Kensico Graveyard where many of our relatives are buried.  That is where my other two daughters are - Jocelyn and Alyssa.  The poor babies had bad hearts also and Alyssa passed away waiting for a donor heart that never came.

I run down to the grocery store and purchase the few items that Kayla wants that Grandma and Grandpa can deliver to her as a care package.

For dinner, we are all happy to have a nice grilled meal together.  I make a large plate of fresh fruits and there is fresh salmon to grill.  There are salads and red potatoes.  Mike's brother Chris is joining us.  I have my specialty at the ready too - homemade rhubarb pie made from my garden!  So it's Chris, Pops, Lori, Mike and me and we sit down....

A phone call!

It's Kayla!

She's in terrible pain with her canulas!  Rosie has crushed up oxycodone for better results and faster travel in her stomach and blood stream for pain relief.

Kayla says that no one answers when she presses the red button at her bedside.  No one will help her.

'"Please help me!  She pleads with us.

Our food is getting cold...Michael is furious.

We begin our "get action" angry calling to the 7th VAD floor...