"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.

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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!