"The Kayla" - Tuesday, April 4, 2011 - BIVAD Implant

Kayla Quote:  "Finally my world has begun to change colors, I have things to do, jobs to run, people that care for me...classes, nannying, running Lia Sophia jewelry parties, sorority life and gaining new friends...one problem...my mind and body are still frozen in place...this new life is so close...I can feel its warmth...its rays beckoning me with the promise of normalcy...my broken body and skeptical mind work in time to hold me still...migraines, high blood pressure, high heart rate, fatigue, fainting, puking, sickness...I've grown tired of this body and all its flaws so stifling compared to the life I wanna live...Can I trade it in for a new model?
I've paid my dues...have I not suffered enough?  Please Dear Lord, make me better, make me lighter, stronger in mind and body...this is my time...Please help me....I'm at the peak but I don't want to fall off the mountain...I want to spread my wings and fly.....       Kayla Trolle 10/25/09

"My body locks me down and holds me miserably in place."  Unknown - probably a musician

Short Synopsis:  They told us that the ECMO had to come out.  A huge surgery was scheduled and the cardiac surgeon held a meeting with me.  He said it was a very serious surgery and very high risk but that we did not have a choice.  It was the only route to continued life and he felt confident it would go well.  It did but it took 9 hours and Kayla needed 26 units of blood but she made it, yet again, through a big hurdle.

Long Story: This was going to be a very scary day.  Kayla had to transition to a new device that was more long term.  She had damage to both left and right ventricles of her transplanted heart so she needed a BIVAD - a bi ventricular assist device.  The surgeon said it would only take 3-4 hours, that he was confident.
His surgeon's name is Dr. Hiru Takayama.  He works closely with Dr. Yoshifumi Naka (or as they say Yoshi Naka).  They are the best of the best, I am told.  Dr. Takayama was very tall and thin and straightforward.  I spent a lot of my time looking at his long slender fingers.  He had perfect surgeon's hands.  I only knew this man for 10 minutes, a complete stranger in a blue doctor's uniform, yet I trust him completely.  My daughter's life was in his hands and it was dangerous.

I watched him walk away down past the elevators and towards the ICU.  He walked carefully and with a plan.  I was all alone but calm.  I looked around the waiting room and many families were gathered there with their own dramas.  To the right was a big Irish family.  Their 26-year-old daughter, Lindsey, had just received her double lung transplant.  She was doing well, just 3 stalls away from my daughter.  There was a Jewish family - 3 brothers and their Aunt.  Their mother was also in the ICU.

I sat down by myself and wondered why I didn't have a clan with me.  It didn't take long....my mother and my cousin, Daryl, came to wait with me.  Missy, Erika, Emily, Carlos and Rui also came.  It was all a blur - I can't remember if anyone else came?  I don't think so but I was so happy with these comers.  We waited and we waited and we waited some more.  3-4-5-6 hours went by and no one could tell us anything.

Finally, my cousin and I went down to the 4th floor where we were told the operation room was.  We just walked into the corridor and found a recovery area and asked someone there to help us.  This man called into the operating room and was told, it was still going on.  We walked back upstairs.

"At least I know she is still alive," I remarked.  All agreed and we were calm for the moment.

Finally, after 9 hours, the surgeon met us at the elevators and told us that it took 26 units of blood.  This is normally a very bloody operation but Kayla was outside the limits.  She was bleeding almost faster than they could help her.  The device was in place and they were now stabilizing her.

I was relieved.  She had managed to overcome the second big hurdle.  When I went in to see her, she was very bloated, all part of the plan.  They continue to control how much fluid goes in and how much comes out.  She had gained 50 pounds of fluid for this surgery but they were not worried.

Erika burst into tears and I put my arm around her.  Rui could not even approach the bed so he stayed 10 feet away.  I thought this big tough guy was going to pass out.  Carlos went up to the bed and took a closer peak.  Carlos knows better than anyone else what Kayla is going through.  Carlos has a double lung transplant and for the past 4 months before his surgery, he was living in the hospital with an intubation tube in his neck.  The lung family was very happy to meet Carlos as he has had his new lungs for nearly 2 1/2 years, having received them in late November 2008.

The more you see what is going on in an ICU unit, the more you can stomach.  I try to look around and learn what they are doing.  It looks like you are on another planet, with all the tubes going in and out of the body.  It"s like they are making Kayla into a bionic woman.

She has been unconscious now for 5 days.  She has had no nutrition.  They say that is ok and they begin to really think about that on the 7th day.  Kayla would be pleased.  She is probably losing a lot of weight, something she likes, but at what cost?  She is lying on her back with her legs stretched out straight and her arms at each side.  They now have pressure cuffs on her legs to avoid pressure ulcers, something that can happen when you cannot move your limbs.

A few days ago, I was greatly saddened when she was a little bit up from her sleep.  She tried to open her eyes but could not.  She squeezed my hand when I tried to leave, so I stayed.  I looked at her face and it was immobile but she was able to wince a tiny bit and struggle toward me.  She was crying.