"The Kayla" - Thursday, April 7, 2011

Kayla Quote:  "I feel welcome and safe there like no one would judge me...I can be accepted - I wish they could understand how much they saved me from myself over the years...they really have."
Kayla about the Pospisils  2/26/07 3:48 p.m.

Short Synopsis:  Kayla continues to show that she is made of strong stuff.  Amazingly, she has made it through 2 major surgeries and is still with us and fully intact.  She is still progressing well.  Remember the 50 pounds of fluid?  Well, now they wanted to take some of it off.  The first day they were able to take off 5 liters - that spells to 11 pounds.  It's 2.2 pounds per liter.  The next day they were able to take off another 4 liters - that's an additional 8.8 pounds.  It's steady Eddy right now....a lot of waiting and watching.  She is progressing well.

Long Story:  It is now a waiting game.  Kayla has been fully sedated for 7 days.  She is still on the respirator and now she has a new device.  Basically, they are pumping all the blood through her body with this machine.  She no longer has a regular blood pressure.  There are 4 tubes that lead in and out of her body and the pump is pushing the blood through her entire body through her transplanted heart.  It is done by centrifugal force and there is no back up motion so there is no diastolic pressure, the bottom number - only a systolic pressure, the upper number.  On the monitor there are two systolic numbers, one for the right ventricle of her heart and one for the left ventricle.  It's as if they have created an artificial flowing of blood outside her body to keep her heart going.

The catch phrase for Columbia Hospital (New York Presbyterian)  is "Amazing things happen here!"  They have a huge banner up on the cross walk on the second floor outside the building.  Every one can see it as you drive underneath in the street.  I am now believing them.  They have kept Kayla alive for a full seven days now.  In any other place, she would have been dead in less than 4 minutes with the cardiac arrest.

I cannot keep up with them.  As soon as I understand what is going on, they spring new stuff on me.  The medical advances they have made in the last five years are mind boggling.  Kayla is lucky that she has been in the right place at the right time.

Back to the BIVAD device - the dark red blood, which is in two of the tubes is for the right side (venous) and it is out of oxygen.  The bright red blood for the left side (arterial) is full of oxygen.
Here is a run down on the medicines she is on this day and dosing changes constantly.  It is fine-tuned a lot, depending on what the blood results tell them.

On Respirator
Nitroprusside  2 mcg/kgl min
Ketamine  3 mcg/kg/min   (This is a medicine that keeps her asleep)
Dexmedetomidine  1 mcg/kg/hr
Furosemide  5 mg/hr
Insulin Regular 1 ml/hr  (This is to help recover from surgery - she is not diabetic)
Cyclosporine  10.4 ml/hr
Vasopressin  100 units/hr
Lorazepam  3 mg/hr
Fenoldopam  10.5 ml/hr
IV drip fluid  25 ml/hr

They put some of the medicines on stand-by on occasion for various reasons.  At the moment, they put cyclosporine on "stand-by" because even though it's her main immuno-suppression drug so her body won't reject the transplanted heart, they want healing for the surgery she just went through.  Also on standby are vasopressin and fenoldopam.

The monitor also constantly records other important numbers.  Her HR (heart rate) is 77.  Her two blood pressures are 86 and 84.  Her respirations per minute are 14 (normal is 12-20) - this is controlled.  Her temperature is 37.0 centigrade.

She has three chest tubes for drainage.  It's the Pleur-evac system.  It bubbles and sounds like a fish tank.  Fluid is draining and they can tell if there is hemmoraghing going on as it drains excess fluid.  The fluid is bright red after surgery but as the days go on, it becomes clear.

In the mornings from 6 a.m. to 11 a.m. the teams come through and many important decisions are made.  Family members are not allowed in during this time.

Kayla's chest cavity is open, completely open.  They put a clear bandage across her chest area and I took a quick peak.  It looks like a big deep dark maroon hole.  Her sternum was sawed open and it's split.  They leave it open for a few days following the implant surgery to watch for bleeding.  This way they have quick access to control bleeding.  She only required one more unit of blood so the risk of bleeding was over.

They were supposed to close her chest today but there were too many surgeries in the operating rooms and no room for Kayla.  They were going to staple her sternum back together and do several layers of stitching but postponed until tomorrow.
 
Kayla had a special guest today.  I am happy when her friends come to visit.  As she comes up from sedation, she will benefit with visits from many friends.  Kayla loves everyone, as you all know.  Her special gift to this earth is that she puts people together.  She continually puts my family together - my sisters, my parents, everyone.  She is the glue of our clan.

Nicole always comes to see Kayla in New York.  When she has a day off, she comes by herself to visit us.  We love her dearly.  Kayla and Nicole were housemates for 18 months up the street and their friendship was sealed during that time.  Nicole is an IT expert and she is studying to take the MCATS - the entry exam to become a doctor.  She is working with Yale New Haven Hospital with their medical software system.

I asked Nicole to help me set up this blog and she was incredible.  We spent time designing it and I was very happy with the outcome.  I have been wanting to do a blog for at least a year but had no idea how to even begin.  Now it's a go!!

Nicole enjoyed seeing Kayla in the ICU.  She brought a nice entertainment magazine for Kayla for when she can read it.  It's going to be a while before Kayla is in a wakeful state.  Aunt Jayme sent a ton of entertainment magazines by express mail for Kayla also.  Mike and I read her parts of magazines when we feel she is understanding.  She is too heavily sedated right now so we are not sure about this.

We also saw Janice, mother of Janelle, 25, Kayla's dear friend, who has had a heart transplant for 22 years.  Janelle just received a kidney from her brother, last July 2nd.  Janelle, Kayla and Carlos are part of a special survivor's club that few of us understand.  They are living proof that transplantation works.

Janelle was here at Columbia getting a kidney biopsy.  As she slept through her recovery from that procedure, her mom came to keep me company and go see Kayla.  Janice asks lots of the right questions.  We support each other all the way with our daughters.  The girls first met when they were barely 3 and it's been a life-long friendship.

I would like to talk about the Pospisils.  This family is the story I want to tell today.  These people are among the most special people that God has ever put on this earth.  When my daughter was a teenager, she needed to grow away from me and Mike and she picked the Pospisils to attach to.  I had no idea who these people were, not a clue.

The first time I knew about the father, Charlie....well, a big pot of rosemary chicken soup was in my kitchen, on the counter.  I asked - "What is this?"  At the time, Kayla was in the hospital for a few days.  She lives in hospitals a lot of her life...it comes with the territory of being born with a bad heart.  Kayla has a large collection of hospital bracelets, dozens and dozens of them - proof of how often she has to be in them.

Charlie made the soup and there it was.  Kayla had been spending more and more time at the Pospisil home.  She was very happy there.  She was attached to Charlie's daughters - Rachel and Robyn and she began to spend even more time there.  She spent many a night sleeping in the basement.

I wanted to know more about these people so I paid a visit to them.  I found warm people who cared about my daughter.  This was going to be her second family - a family she chose to join.

Over the years, Charlie has proven again and again, how he is Kayla's second adopted father.  The Trolle family joke is that the only thing I found wrong was that Kayla was sleeping in a basement that, had there been a fire, she would not have been able to get out.  If that was the only thing I found wrong, who could complain?

Charlie texts me continuously to see how Kayla is doing with this current traumatic crisis.  He is very upset and worried, as only a special friend can be.  He is part of our family now and always will be...