"The Kayla" - Wednesday, June 8, 2011 - "More on the Pipster"

Kayla Quote:  "I don't want to die in pain Mom.  I don't want to die a long slow death."
                                                                                   Kayla in the afternoon

Short Synopsis:  There are endless details to go over as we get ready to leave the hospital sometime soon but not exactly sure when.  We spend a lot of time watching "Pip" on the video cam and also looking out the window at the beautiful slow moving Hudson River.  Pip is near fledging.  Thousands of watchers are excitedly viewing his progress.  Others are in the chat rooms learning about red-tailed hawks and talking about sweet Pip.  When will he go??!  At the hospital, there are watchers too....watchers who are charting Kayla's progress as she gets ready to be sprung!

Long Story: Violet's behavior is changing as Pip grows.  Pip spent the first night alone in the nest.  He is getting stronger and rougher so it's not a bad idea for the parent bird to stay away.  Pip is practicing hunting skills and all he wants to do is eat and the parents have a hard time keeping enough food in the nest for him.  He needs to fly out soon.

It is 9:13 a.m. and I log into the chat room.  The expert is there.  Everyone grows quiet when our teacher arrives to instruct us regarding red-tailed hawks.  He is one of the world's leading authorities on this particular prey bird.  We are awestruck.  It is palatable how quiet it is in what has become a natural internet classroom.  I envision several hundred people reading, learning and questioning.

John Blakeman:  "If Pip survives (20% chance in first year) he will begin to mate (pair bond, not copulate) in the third year.  For now, he won't fledge until hard quilled - all blood out of his feather quills."

Pip is calling for breakfast.  Persistently!

J.B.: "The vocalizations are telling the mother he is hungry.  Pip will learn to hunt after he fledges.  His talons look menacing but are still soft.  In a week, the nails will change."

They pair bond in December and copulate in January.  They have their young in March.

J.B.:  "Not important finding a good mate.  It is much more important to find a good territory with lots of prey." (Aside: such as Washington Square where Pip is with all those rats! And pigeons too!  And the occasional squirrel!)

J.B.: "Having territory and keeping it."  (Aside:  Only way to survive.  Most red-tails do not mate or have families.  They just have lives.)

J.B.:  "Pip is always on the ledge in every respect but won't fall off."  (Aside:  It's a 120 foot plunge.)  "They digest bones but not fur."

J.B.:  "20% - after that survival goes up nicely each year.  As they live longer - they will live even longer."

J.B.:  "Pip is perfecting his eyesight in the next 2 weeks.  He will spend a lot of time looking out into the park."

Shake Your Tail Feathers:  "Will someone be able to ID Pip in the future?"

J.B.: "IDing Pip will probably be difficult unless he has some unique feather patterns."

More questions from the forum.

J.B.: "Ledge nests easier to build than tree nests, far fewer sticks."

Shake Your Tail Feather:  "Million dollar view.  Best real estate in NYC.  Red-tailed hawk nests."

J.B.: "Not the view for RTs, it's the prey base nearby, in this case, rats.  Red-tails don't lose weight after fledging."

Thyrdrail: (entering the chat room) "Who is John Blakeman?"

Birdy12: "John Blakeman is a hawk expert."

J.B.: "I am an RT expert."

J.B.:  "Pale Male (Aside: Long surviving male red-tailed hawk in mid-town Manhattan with nest on top of great piece of real estate - has lived there for years and through many mates who died) drops off tall buildings, sets his sights on one pidgeon in the group, goes 120 mph and the poor pigeon!"

It is 10 a.m. and Bobby flys in with a small rat.  Geez...this will not be enough.

(JB is taking a 15 minute break - He's back again.)

J.B.: "Pip is getting aggressive. 'Gimme that Mom!' "

Violet drags the rat across the nest.  Then Pip drags the rat across the nest.

J.B.:  "Sooner or later Pip is going to lash out and grab Violet.  Violet will then just drop off the food and fly off."

The small rat is for both of them.  Violet tears off bits for Pip.

J.B.: "Notice the quickness of Pip's head in grabbing tidbits.  His nerves are starting to mature."

J.B.:  "Pip is still sitting back on his tarsi, ankles.  Next week, not so.  I am guessing that Pip is now 700-800 grams.  Violet is probably 1,300 grams.  Let's face it.  Dining with RTs isn't elegant although it's efficient." (Aside: Pip is greedy!)

J.B.: "Violet does eat on her own, but mostly away from the nest."

Questions regarding bathroom behavior.

J.B.: "Slices not squirts for going to the bathroom.  Lift tail and slice away from nest."

J.B.: "Bobby isn't seen much because he's out there hunting for the whole family.  He's the Great Provider."

J.B.: "Pip's tail is now 25% down."

There's a movie - "Nature Pale Male" in case you are interested.

Shake Your Tail Feather: "Where will Pip hang out after fledging?"

J.B.: "Washington Square Park for the summer."  Nice.  Among all the New York University students and near the Bobst Library, where his parents have nested atop.

                                    - - - - - - - - - - - - -

It is 95 degrees out today.  The hot weather is making everyone listless.  In the front foyer to the hospital, security took down a big black man.  Blood was on the floor by his mouth.  At first it looked like he was having heat stroke but he was bellowing.  Then there were 3 policemen on top of him.  Big city atmosphere here.  Security doing their job.  Wonder what he did to deserve this treatment.

                                   - - - - - - - - - - -

I spoke with Dr. Kent, the addiction psychiatrist.  I told her that Kayla talked about going to the beach, a favorite place of hers but that she would be too embarrassed with people seeing her with this machine pumping and making loud whooshing noises.  Kayla says the machine looks like a bomb strapped to her ready to go off.

The doctor said Kayla will gain confidence and go out more as she gets comfortable.  We can take small adventures together.  I tell Kayla I will take her anywhere she wants to go.

                                 - - - - - - - - - - -

Marva, the Medicare Home Health Aide, has been very helpful.  She can get us 4 hours a day for one month with a helper so I can get breaks to go out and grocery shop, exercise, etc..  After that they taper to a few hours a week, then nothing.  Sounds like a decent plan to me.  It will get us started.

                               - - - - - - - - - - -

When I saw Kayla she was full of negative thinking and probably in immense pain.  She was not listening and then she grew anxious.  She wanted Lorazepam.

The nurse said, "What else can you do?  How about a wet wash cloth for your forehead?"  Ice chips to chew.  Lidocaine patches for her back.  Yes!  All of this is working well but then someone brought in the pill, which she took.  Kayla got sleepy.  Maybe we could have held back that pill but it was given anyway.  She is napping now.  It is 3:30 p.m. and the shades are put down.  She likes the dark and the quiet.

Kayla has not walked yet today.  She was enjoying the Teen Mom show on TV as she sat watching the barges go by on the river,

"Mom, look at that beautiful barge.  It's low in the water. Why?  It is supposed to be like that?"

A tug boat is pushing the barge down river now.  They have come from under the George Washington Bridge and into our sights.  Very calming.  Water is gray.

"Mom, take the "Marcy bud vase" back to Tarrytown.  I would feel terrible if it broke.  Very guilty.  Is it crystal?"

Marcy, my sister, has been gone since 1986.  We all miss her still.  She is a presence in our lives and this simple bud vase is one connection to her.  We have many wistful connections to her.

Kayla has been keeping a pink rose, given to her by Grandma, in it for days.  We have our methods to keep it going.  We take the rose out daily and clip the bottom of the stem on an angle.  We put in fresh water and powdered flower food.  It came back but was now just holding on.

"Maybe some more time for it, Kayla," as I look at it.  Kayla will do anything to keep a flower going.  She gently lifts it out and the petals all fall past her hand onto her hospital tray.  She looks sad.

"Oh, it's over," I say.

"I hate to see it die, Mom."

"Oh" is my slow response.

"I don't want to die in pain Mom.  I don't want a long, slow death."

"I know....(pause for a minute)....I feel positive Kayla.  We can go home, build you up, wait for a heart.  We can do it."

                             - - - - - - - - - -

 I come home by 6 p.m. and plant flowers with little Eli.  It's still 90 degrees out (it was 96 in Central Park).  It is so hot we abandon the planting as we are dripping.  Michael has a large slow back-and-forth sprinkler going by the kitchen window to water his beloved patch of grass.  He does not want it to die like last year.  It is luxuriously green and the high sprouts of water are very tempting. 

I encourage Eli and he begins to run and play in the water.  He has all his clothes on but who cares?  He is full of pep.  He is making the most wonderful, loud yipping noises - the sounds of a happy unencumbered child...

"The Kayla" - Tuesday, June 7, 2011 - "The Inquisition"

Kayla Quote:  "Listen to the mustn'ts, child.
                           Listen to the don'ts.
                           Listen to the shouldn'ts,
                           the impossibles, the won'ts.
                           Listen to the never haves,
                           then listen close to me...
                          Anything can happen, child.
                          Anything can be."
                                                   Shel Silverstein

Short Synopsis:  Kayla, Mike and I are doing extensive training to learn how to operate the VAD (Ventricular Assist Device) machine so we can take Kayla home to wait for a heart.  If the machine fails, we have to be able to get her up and running quickly on a second machine.  Her compromised transplanted heart cannot support her body in any way.  It no longer can beat on its own.  The trainers are excellent and we try our best.  Today Kayla and I did an open book VAD test together to make sure our knowledge was sound.  There is also a meeting with the team to go over all kinds of detail.  Exciting but scary.  Kayla is stable and ready for home.  She has been here since the end of March.

Long Story:  Kayla is ready to be discharged to go home to wait for a heart.  There is excitement and fear all rolled into one.  Kayla wants to be with her friends and be home again.  She has been talking about it for days.

                                                   "The Inquisition"

Kayla, Mike and I are escorted into a medium-sized conference room.  There is one big long table with about 12 chairs around it.  It has taken a good deal of planning to get all of the different doctors to come with their current status reports on Kayla.  Each will express what we are all hoping for in her future.

Dr. Uriel is the head heart transplant cardiologist on service and in charge of this hospital floor.  He is the leader and a clear thinker and speaker.  He starts out saying that there is a clear need for a second heart.  Kayla is stable from a cardiothoracic perspective.  She has been in the hospital for 10 weeks and has had this pump for 6 and is doing well with it.  The meeting is all about what we need to do to be ready for the transplant.  The inquisition?  Dr. Uriel expresses that the pain killers are a very big limitation to getting a transplant.  The amount Kayla is currently on, including the methodone, will cause a lot of problems.  We need to limit the number of people (outside doctors) who can prescribe these pain meds so we can see exactly what she is using.  She has kept a "pain journal" in the past. In it, she records what pain she has and what she uses to help that pain.  He has discussed this major problem openly with her many times and has let her know she cannot get a transplant with her current level of meds.

I like this man!  Kayla has a hooded expression on her face.  Her eyes are darkening and she is sinking into her wheel chair.  What they don't know about our Kayla is that she is strong, probably one of the strongest people I know.  I would have checked out a long time ago with this life.  I cannot believe she is even here with us and how often she has beaten the odds by the thinnest of surviving threads.  There are very few people who make it 12 years past their first transplant, nevermind, being here all ready to receive a second one.  She has weathered numerous overwhelming heart failures and has suffered three strokes.  People think you get a heart and it's all hunky dory...that your life is normal.  It's all about getting the most out of that newly transplanted heart as possible.  It's a waiting game.  You squeeze as much life as possible with meds, doctoring, repeat hospitalizations due to immunosuppression, etc...  It's all about desire to live.

The pain medications help her cope with incredible amounts of physical and psychological pain, more than any of us have had to go through our entire lives.  Kayla is an inspiration to all of us not to give up even though every day she wants to.  She continues to be a walking miracle and Columbia is excited to have someone like her.  She defies all the odds every day, every hour, every minute.  She is still a breathing spirited girl who wants what every else easily has....a normal life.

Kayla is angry all the time, angry at her predicament, angry at her unfair life.  She started out with so much confidence and has been knocked down at every turn and still she is here with us.  If I know my Kayla, she will get off those damn pain medicines she needs right now.  She can do it.  She just needs time.  She needs home.  She needs her friends filing in one by one through our home, lifting her spirit.  She needs to get dressed up in some beautiful clothes and make up and go out dancing and dining.  She needs to be a 26-year-old looking for a mate.  She needs love and encouragement.

The next one speaks. It is David, her physical therapist.  He has worked hard with her to get her walking again.  His report details that she can walk independently with the BIVAD.  She can pull along the luggage device and go up and down the hall and up and down stairs.  At home she must increase activity and must be self-motivated.  He is giving her a program to follow at home to gain physical strength.  The stronger you are going in to the transplant, the easier it is after the surgery.  One must be a self-starter.

Physical therapy will come to the house to help but a lot more is needed.  A lot of walking...frequently!  He details that walking around 4 to 5 times a day would be ideal.  Motion and mobility is very important.  Malls open early for walkers and there is air conditioning there.  This would be a good place to go.  She must walk with a purpose and walk for exercise.

Dr. Kent, the psychiatrist, spoke next.  Kayla is "doing well" and coping with enormous amounts of medicines which are necessary and good to stay on for the time being.  She no doubt has been through a terribly painful surgery (4 large canulars in her body as one part of this whole scenario) but it is getting better and better as she goes along.  I asked, "What do I do if I run into trouble with more real pain?  She is on so many narcotics."  In the short term Kayla will need similar amounts that were needed in the hospital but long term there will be a tapering of the methadone.  Dr. Kent spoke with Kayla's local psychiatrist, Dr. Ligorski, and he was willing and able to carry her forward.

Dr. Schuman, the pulmonologist, was next.  Her lungs are stable he informed but the lower lobs are not ventilating well yet.  She is sitting in bed too much and needs to move.  Her blood pressures are stable 90/60 or 100/70.  The pump totally supports her heart and supplements it.  There is only prednisone now for immunosuppression.  No other drugs are needed.  The old heart is only a vessel for blood to be pushed through.

The BIVAD pump that she is on has been on the market for 15 years and is FDA (Federal Drug Administration) approved.  It is a very successful device.  Most of their patients are on the LVAD (Left Ventricular Assist Device).  There are only 2 patients currently at Columbia on this BIVAD device.  Both of Kayla's heart ventricles were severely compromised during the cardiac arrest on April 1.  That was the reason for this device.   At home we are to measure her blood pressure 3x a day.

Then it was back to a general overall discussion.  Kayla is a re-transplant.  This is much more complicated.  Her body has waged a war against this first transplanted heart for 12 years.  There is a build up of antibodies which are still in her system and will make things more complicated if and when she is lucky enough to get a new heart.  At 14, with the first heart transplant, her body was brand new to this assault.  Even with all the wonderful medicines, the body still cannot be tricked into thinking that the foreign heart belongs in it.

Kayla needs a certain size heart (she is a small woman) and a certain blood type - O positive (the most popularly needed blood type so the list is longer).  They have to cross match antibodies.  There is a certain period of time between transfusions where they continuously need to check her antibodies.  The test is called the PRA - Panel Reactive Antibody.

The recap: at this time she is thriving on the device and getting stronger.  Her last 6 weeks have been totally stable from the cardiac perspective.  There is no need for an oxygen tank.  Most importantly, the pneumatic device can handle warm weather but it cannot handle water.  If there is rain, Kayla must not go out into it.

Dr. Uriel says we are looking to the future now and planning for it.

Wow!  This is really going to happen.  Kayla is destined to go home to wait for that coveted heart!