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..." Kayla, 10/23/09, one month before her 3rd episode of extreme heart failure
Short Synopsis: Today Kayla had trouble breathing. The oxygen reading was 100% but her chest was tight and there was pain. When she walks, she still has numbing pain in her left leg where they did the femoral artery repair. Somehow, she still managed to have a good day. She took two walks around the corridors.
The nurse informs us that Kayla needs more protein in her diet. Her blood level reading shows 3.6 and it needs to be 4+. She is listed as a 1a status, which is not the top listing. She is not ready to receive a heart. The doctors consider her too physically weak. She would not survive the heart transplant surgery. There are a few issues to resolve.
Even though her lungs are improving, she continues intravenous antiobiotic treatments for the residual pneumonia. They say she may be released as early as 2 weeks and we are beginning to learn how to operate the PVAD machine. It's pretty straight forward with several different power sources. There are two batteries that slide into side pockets - each has 55 minutes of time on it. These are the power source when she is walking around. There is a plug which is used when she is stationery. There is also a back-up machine, in case the first one fails and a machine for re-charging batteries. You are given 8 batteries.
Kayla's lungs are a major issue. She needs breathing treatments to help open up passageways. She needs muco-mist which breaks up the flem in her lungs, but there is a product shortage so they have to mix it in exact proportions for each patient that needs it. I watched horrified as my daughter had trouble breathing, as she had to wait hours for this special dose. The nurse says they used to have ample supplies of it in the supply cabinet just 1.5 weeks ago.
I found out that they no longer give Kayla cyclosporine. This was a complete shock to me. The cyclosporine is the major immuno-suppression drug which keeps the body from rejecting the heart, which it considers foreign tissue. Why wouldn't the body continue to reject the transplanted heart? I am told that the heart is so damaged that it no longer presents any threat. It cannot be damaged any more. It is just a vessel that the blood flows through from the action of the heart pump ventricular device machine.
This makes no sense to me but they know. Obviously they tried it at some point in the past and discovered that the patients did not have to deal with rejection issues. The best news is that Kayla's body will have a reprieve from the anti-rejection drugs until she receives a new heart. Then they would start them again. Ok, we will take anything positive here. Anything that gives her body any kind of break!
Long Story: Bumpy and I take separate cars from Ridgefield and head to the hospital. Tonight we are staying in Tarrytown and for the next several nights we will go to Robert, her brother's house. Bumpy is following me in her car. I by-pass the regular entrance to Route 684. I have a mission in mind and wonder if Bumpy will figure out what I am up to.
We are headed down to Pat Banta's old house on Colonial Hill Road. It was his first house with Tina where they started their family together. It's where I first met their newborn baby Heather when she was just 3 days old. The house is a sweet small colonial type up in a secluded area off this main road. The access road up is all dirt, leading up to a handful of houses in the thick woods. The quiet dead end is located next to two huge reservoirs inbetween Mount Kisco and Millwood, N.Y.
I stop my car at the bottom of the hill and Bumpy is laughing, "You're going to Pat Banta's house, aren't you?" I tell her to jump in to my car.
"I have no idea which one it is. I have this image in my mind though. I can find it, if they haven't changed it too much." I say to her.
We drive up and see all the tucked in homes at the ends of long dirt driveways. Not that one. Nope, not that one. We climb higher. Higher. The growth is thick all around. Bumpy is apprehensive. I just want a picture that we can send to Pat, I tell her. I have memories there. John Hall and I used to go and visit. Pat would be splitting wood in the garage. Pat would be making eggs with crunchy green peppers. The new baby is born, Heather. Pat's mom was proudly sitting in the cozy livingroom - all his family was there, happy. Tina is beaming. I was told I could go upstairs and see the sleeping 3-day-old beautiful new human. I climb the stairs as they all have conversations below. I creep in and it is dark but I get a very close look. She was beautiful, so small, breathing. She is perfect. There was a bit of light coming in the window. I can see her for a sweet minute...
We keep on driving up.
"That's it! That one!"
"Are you sure?"
Bumpy is ready with her great camera. She takes several pictures. Click, click...
The house has different windows in the front that I don't remember, like a green house. Oddly, there is debris strewn all over the yard. A weird sign says don't hit the cats, they are old. A few fat chickens are running ahead of our bumper. A couple old, skinny cats run and hide under rusty things left there, tires, pieces of old equipment. The house needs paint. We are trying to figure out if anyone is home. No one appears to be. It's getting creepy.
"Oh Jeessus, there is a car there. Someone is here!" Bumpy is scared and wants to leave immediately.
"This is wrong, Steph. You don't go onto someone's property. In Texas, they can shoot you dead. They do shoot you dead! They have every right!"
I try to hush her. "I don't see anyone," I say as we scan and look. This place is eerie now.
Out of nowhere, a discheveled white-haired woman appears and is at our car window, lickedly split. Her eyes are big, wide. It scares us. Bumpy is sinking as deep as possible into her seat. Gotta avoid that bullet! We feel trapped.
I whisper seethingly to Bumpy, "Let me do the talking!"
What are we doing here, the woman demands.
"Hi, our friends Pat and Tina Banta used to live here like..over 30 years ago. We just wanted to see the house again."
The woman instantly warms up and says to Bumpy.
"Oh yes, I bought it from Tina. You know Tina? Are you Tina?" She looks directly at Bumpy, all smiles, but her eyes are strange and vacant.
Bumpy tries to talk but it is clear that she is nervous and she says, "No, I'm not Tina. We are friends of Pat." As we try to explain more, the woman becomes agitated and gets angry. She backs up from the car, not giving us even the slightest chance to explain,
"Get out! Get out of here now!" She hisses at us. She points her finger. Bumpy tells me to get out of there now, now! I turn around and drive out. Am hoping she is not getting my license plate number.
"Did you see that?" I ask Bumpy.
"What?"
"Her license plate - it said Pet Loss. I wonder if she is in some kind of animal business. She was not normal. She was scary." Her emotions moved too fast from friendly to angry. She never gave us a chance at all. No matter. I got what I wanted. The pictures for Pat. It was obvious that crazy lady didn't realize Bumpy had taken them.
Bumpy pointed out that as long as we mentioned Tina, who comes from a famous family, we were fine. After Bumpy wasn't Tina, it was over.
I continued, "Remind me to never take you sleuthing ever again."
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Bumpy and I brought some gifts with us to give Kayla. We got her a white skirt, a black top and a brown patterned tank top. All the clothes were picked with looseness in mind, since the canulars take up a lot of space and comfort is most important thing, yet Kayla likes to be stylish. We also brought her favorite panini sandwich from Parma Deli, a capri - Italian bread toasted with tomatoes, mozarella cheese, basil leaves, sprinkled with balsamic vinegar.
The clothes were basically a flop. Her friend Rachael laughed at our choices, but we had fun laughing too. Back to the store we go to get credit and Kayla can have money to choose her own clothes.
Many came to be with Kayla on her birthday. She received 3 different cakes. The chocolate one was the best. Those who showed up: Adam Keller, Missy Main, Erika Robertson and her sister, Emily; Lauren Galanti, Rachael Finaldi, Rachel Pospisil, Bumpy, me, cousin Daryl and her husband Tom and her brother Thomas and Tom.
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I visited the 5th floor cozy corner today. It's so bare. All my friends are gone. Time to move out. I leave the chalk board, the nice new box of many different colored chalks and the eraser. There is half a jug of water left over from Mordechai's family and a half empty water bottle, all sitting on the half wall.
I pick out pink chalk.
"I miss you Beth. I can't pop in since they moved your mom to the other side of the ICU."
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Pip is the new name for the baby red-tailed hawk. They put the vote to the public with the top ten names suggested - 522 people voted for Pip, including me! 519 people voted for York, after New York City. Pip is after the character Pip in the novel Great Expectations written by Charles Dickens.
According to Dr. Elizabeth Bunting of Cornell College of Veterinary Medicine, "a team of 6 experts was dispatched by the Departmet of Environmental Protection last Thursday to observe Violet at close range from the office of the president of New York University on the 12th floor of Bobst Libray. They debated whether- and the best way - to remove Violet from the next and address an ill-fitting wildlife band on her right foot, ultimately concluding that the best path was to do nothing." - The New York Times 5/19/11
Yeah!
I go to the internet to check up on little Pip! He's a definite plumper-nutter. He is stretching his wings a lot. All he does all day is eat, eat, eat and then practice stretching his wings! He has a wonderful life! Doting, devoted parents, food brought to him all day long, a comfy nest, a warm mother.
He is trying to figure it all out...
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The sun actually peaked out one bitty bit today before it vanished behind the clouds.
Bumpy and I head to Tarrytown for our overnight stay on the couches!
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