"The Kayla" - The Next Four Days

Kayla Quote:  "And the inside turned out and the outside shell scraped the walls within,
                         blindsided and bleeding...daggers...heart.."  Excerpted Kayla Trolle poem 11/8/10

Short Synopsis: Kayla is amazing.  I cannot believe she is even alive.  These four days, Friday, April 1 through Monday, April 4 were days where they watched closely to how she was reacting to the new devices - the ECMO and the Impella.  She is being kept unconscious with sedatives and comfortable with pain medicines.  The devices are short term solutions for acute care only.  They can cause problems if left in after too many days.  The plan is to do more surgery to implant a longer term device that could work for several months.
So far....so good.  She is remaining stable.  She has 13 boxes of different medicines going into a central venous line which is in her neck.  There is a long small board with valves that open and shut.  Each is attached to a see through tube that leads up to each separate box.  Each medicine feeds into the central venous line directly into her neck, body and heart.  It's the fastest way to get medicine into the body.  She is on a respirator.
Kayla said she wanted a Hudson River view.  Just behind her window is the river.  Only a block or two up the way is the George Washington Bridge.

Long Story:  Kayla is now listed as a 1a status in the United Organ of Network Sharing system.  Last November, she was put on the list to wait for a donor heart.  She was listed as a 2.  That means you are sable, walking around and that your heart may get better but you still need a heart transplant in order to live.  The next level up is a 1b which mean you are in the hospital with intravenous drips and your heart needs these medicines in order to function.  The highest level where you are the most sickest is a status 1a.  Kayla went instantly to a 1a status from a 2 at home status. 
The sickest are in the cardiac intensive care unit with 2-3 drips (separate medicines going directly into the bloodstream) or you have a VAD - a ventricular assist device attached to your body, doing the work of your heart.  This means your heart can no longer support your body in any way.
Kayla will have this 1a status for 30 days. Then they make a new decision of what status she will have - it has something to do with competing with other patients in the same hospital for the donor hearts.  Kayla has o positive blood, the most common blood type.  It takes 1-2 years to get a heart at Columbia because the list is long.  She did fly up the list (207 waiting).  
Kayla was originally listed on November 5, 2010.  You also accrue time the longer you are on the list.  She was at the bottom somewhere and is now in the top 10.  I didn't think this was possible and was very happily surprised when they told me this.  Unfortunately, she is too weak to accept a donor heart and she would not survive a heart transplant surgery. The plan is for now is to try and strengthen her so that she could receive a donor heart. 
The good doctors control the amount of fluids that go in and out of her body.  They puff her up on purpose to preserve her organs and then let out the fluid for other purposes.  Medical technology continues to change all the time.  
The ECMO is relatively new on the market...maybe even only for the last five years.  There are only a handful of hospitals that have it...Columbia, UCLA, University of Michigan and a couple more.
If Kayla had been at any other hospital, she would not have survived the cardiac arrest.  She would have been dead in only a matter of minutes.  If she had collapsed on the floor of our living room, she would not have made it.  Local hospitals could not have saved her.
We knew her heart was getting into lots more trouble.  She was growing weaker and weaker over the last couple of months.  Sadly, she had to let go of many of her beloved activities.  She had to say goodbye to her sorority, where she was running for a top position, vice president.  She had to let go of her nanny job for seven-year-old Olivia around the corner.  She loved seeing Olivia for a few days each week but then she was too weak to drive and it was dangerous.  Mike and I helped her the last 2 times she had to work.  The little girl, so precious, didn't understand why Kayla's parents were driving her along with Kayla.  She had to let go of her dreams to go back to school.  She could no longer run with her friends.  They were vital and doing what 25-year-olds do....run around and see each other.
Her world was our living room.  She was even too weak to ask for visitors.  Many times I would call a friend or two to come and see her.  She remained happy with Facebook and her special TV shows - Teen Mom, America's Next Top Model, Jersey Shore, among them.  She relished all her entertainment magazines.  She loved us, her parents, and increasingly, we were the ones who hung out with her.
Sometimes, when she had good visits with the doctors and they tweaked her medicines, she would have a day or two of wonderful energy.  It did not last but it was beautiful.
Kayla would get up off the couch and get all dressed up, like only our Kayla could do...with make-up, special hair, pretty outfit.  She would prance out and Mike and I would marvel.  Then one night, she was even strong enough to drive.  We told her that she could call us anytime if she could not make it back.
Kayla loved going out and being with her friends.  Her heart is so big....she always wants people to be happy and she loves many, many people.
In the intensive care unit, they told us that they would let her out of sedation for a little bit.  They wanted to see if her brain was still ok.  Missy Main, Erika and her sister, Emily came to see Kayla in the hospital.
Amazingly, Kayla was up and we took turns going to see her.  Mike and I were there also but Kayla was responding to her friends much better than to us, her parents.  They only allow a few visitors at bedside.  Kayla could not open up her eyes but she could respond in tiny ways.  Erika told her that she would come and do her nails and Kayla responded to that.  They asked Kayla is she would like to have Emily ("Little Robertson" - Kayla's nickname for Erika's little sister) come in and Kayla vigorously shook her head up and down.
When Missy and Erika came out and asked Mike and I if we wanted to go back in, we responded, "No, she wants to see you guys.  She is so responsive to you.  You go back in! We can see her anytime."
I was relieved that Kayla could squeeze our hands back.  We held and softly rubbed her hands a lot.  She was definitely squeezing us back.  I didn't have to wait for neurology to do their testing in the morning.  I already had my answer.  She was responding immediately to our yes/no questions by squeezing our hands back.  She was also squeezing both sides - that meant she did not have a stroke.
Very soon though, they put her back under and that was that....