Kayla Quote: Friendship is vitally important to Kayla.....
"Subject: I'm hoping this is really you Stephanie...this is Ross from the ICU waiting room!
After bumbling around your blog to work out how I could comment and reach you, on your profile I found this email. (Wonderful blog by the way!)
Excuse me for being old fashioned, but I wanted to check in with you and apologize for the hasty departure on Monday. They came up to take Walter minutes after the discharge nurse left. We were not packed, he was not dressed and the rude woman basically wasn't prepared to wait and said if we didn't go now, the requst would go back to transporation and we'd have to wait until someone came later in the afternoon... Lovely way to be thrown out!
So I was hoping to wheel Walter past you and say goodbye - but it wasn't to be. And of course I even had less of a farewell to Mordechai...I bet everyone is missing him...
You'll be please to know your fruit salad came home with us - and was HUGE hit with both Walter and myself. He munched it down and it no doubt helped with his terrible percocet based constipation..thank you! He's doing well - a little better each day...
I do hope things are going well with Kayla (or as well as can be) and you are doing a good job of 'self care.'
Know that you have us only 35 mins away on the express A train downtown from you - it's almost door-to-door...if you should want a further exploration than the the George Washington bridge or the Hudson River bike and walk trail... And now you have my e-mail and phone number!
A BIG hug and our warmest wishes in the meantime - and thank you for your great warmth and friendship up at New York Presbyterian."
Ross (and Walter and Dan)
Short Synopsis: They are loading up my daughter with too many narcotics. She has pain all the time, especially at the front of her belly where the four canulars are entering her body. They are about an inch wide each. They change the dressing each day, clean it out, put in gauge and cover it again. It's sore all the time and supposedly will get better. I watch the nurse change it. She is very gentle and listens to Kayla carefully. This is one of the top nurses. She takes her time but I am concerned. There is leakage with blood oozing out of the left two cannulars. They watch the hermatocrit number which tells them how much blood is in her body. If the number gets too low, they will give her a unit of blood. The blood bank is ready with blood for her needs. Kayla always needs time to manage this pain. They give her intravenous ativan and also some oxycodone.
We are beginning to explore our options for pain management. I talk with world renown Dr. Slayden, who is the head of the cardio thoracic critical care unit, about complementary therapies. These include massages, reiki, bio-feedback, and mindfulness-based stress reduction, among others, but the one I am most interested in is hypnosis. There is a lot more in the news regarding hypnosis and pain management. It can be very effective with some people in helping them to greatly reduce their pain.
Our beloved Sue Cech, Kayla's transplant cardiologist nurse, who has followed her all along, came by to check on Kayla. She also agrees that new ideas need to be explored.
We need a good hypnotherapist!
Long Story: Once again, I spent the night in nearby Tarrytown. My couch is comfortable and easy to sleep on. I look forward to listening to my Dad's routine. He is 85 now and a content man. He is up first in the whole house, showers, dresses and then he pads down the hallway to the kitchen to make coffee for him and Mom. He has his bowl of cereal - you can hear the clicking of the spoon. He sets up an empty bowl for Talon. Then Dad goes up the driveway to fetch the New York Times and the Daily News, which have been thrown out car windows. By 7 a.m., he is walking back down the hallway, the newspapers in one hand and a cup of coffee for my Mom in the other. This loving routine has been going on for years and years.
But this morning is different. I am the first one up....it's 5:30 and I am wide awake. I get to the hospital by 7:30 a.m. Crossing the Henry Hudson bridge is peaceful and you cannot see out to the Palisades at all through the wall of fog. There are only a few cars and it is quiet.
Mordechai and I decide to walk the bridge again. He has come back from a very long service at his German synagogue, hours long. Parts were good but they include every little thing and it's too much. I laugh and tell him I always sit in the back of my church and sneak out if it's too boring.
Mordechai has more rules of what he can do and he asks the rabbi how far he is allowed to walk. He is told he can only go 4,000 feet. The bridge is nearly a mile wide so he should not walk all the way across. Is this because of all the persecution over the centuries, the fear of your enemy wanting to kill you? Are you held back because there is safety in the group in the city? I am not given a clear answer to this. What about explorers in your group? How do they push the boundaries?
I come from a family that explores and in my generation I have done the most in my family. I am fearless and have travelled all around the world, much of it on my own. My great-great grandmother, who was Mexican, at the age of 13, walked across Mexico. Lucky for me, she walked into Tucson, Arizona and even though it was only a territory back then and not truly part of the United States yet, the best thing she did was to leave Mexico. They were ranchers and the homestead was kept going by the women and children as the men rode their horses over vast territories and were often days away from the compound.
My husband is like me. He went to England with just a bike and backpack when he was around 17-18 years old. He slept in a field with a cow poking into his face and waking him up in the morning, frightening him. He clearly thinks independently regarding all aspects of his life. Many watch and follow him as he is on the leading edge of new ideas and ways of doing things.
I can walk/jog completely across the bridge. I have no rules telling me what to do. I am training for the Ridgefield Marathon and walking across the bridge is a great start to training that has sadly been mostly dropped due to Kayla's crisis. A fast walk every few days across this bridge would be fruitful.
This time I am prepared. I have my t-shirt, shorts, sneakers and water. It's a beautiful, windy day and it's clear now.
The plan is for Mordechai to walk part way and I will go the entire length and then come back. He wears his keys tied to his belt as he is not allowed to carry them for some reason. I am confused about the rules of his religion although he is a good teacher answering my every question about his beliefs. We walk back and I tell him I am an independent thinker. I think about the rules and laws governing my life and if they don't suit me or I think they don't make sense, I break them. I am a quiet rebel.
I tell Mordechai how I have left my Catholic religion. There were many things I felt were very wrong. When I got married I wanted to show respect to my father, who has a strong Catholic belief. I went over to the Protestant religion, which is essentially the same, but without all the damnation to hell if you commit a mortal sin and the soaking of your wallet and the pediphile priests lurking everywhere.
As a child, I felt I had no chance at heaven because a mortal sin is not that hard to commit. Venial sins are everywhere too! I don't believe in fear as a governing tool. They beat the boy's knuckles bloody when I was in Catholic school to make the rest of us behave. And even nearly blind Susan Kelly got a lashing in front of everyone from Sister Marion, when she went into the school lunch line backwards by mistake. Sister Marion lifted her up in the air by her clothes and slapped her in front of all of us. I knew this was absolutely wrong - deadly wrong! I learned right from wrong, not by the catechism, which we had to memorize day in and day out, but by Sister Marion's cruel student punishments.
By the time I was in 5th grade, my parents realized that my academic education was suffering terribly. On the playground, as we ran about in the bushes, Ann Dolcetti told me she wanted to die soon and have angels wings put on her back. Boy was I glad I was plucked out of that environment....but no matter, I was well on my way to my own thinking.
I tell Mordechai about my last encounter with the Catholic religion. I want to respect and please my father so at my marriage I want both a Protestant minister and a Catholic priest. For the Catholics, I had to sign a bunch of documents saying I would raise my children Catholic, etc... I sign knowing full well this is not going to happen. I have to have several talks with the priest and go to marriage classes, which actually, were decent - all about communication in your marriage.
The priest was scary when I had to go into his office by myself one day. I could see something was very wrong with him. He was affiliated with St. Mary's and did not last long at all. I made sure I was near the door in case I had to bolt out of there. He was gloomy and weird and he pulled out a couple of dollars from his shirt pocket and told me to walk downtown, which was a block away, to buy him a pack of Marlboro cigarettes. I did as I was told.
Then during our wedding, after Clayton Lund delivered a wonderful message, it was his turn to speak. He raised his hand high and swept it over the entire group saying, "Now understand this, everyone in this room will die!" At my wedding!
Mordechai felt I should have told someone. I guess I didn't really do that. This was clearly wrong. It seems as though there are better guidelines with the rabbis. They are good leaders.
I tell him, "I respect your strong belief in your religion and culture. I admire that you follow your rules closely. It's a beautiful thing. I don't have too much faith. God has taken two of my biological children and he seems to want this one too. I don't have what you have....you have great faith. I am still searching." Mordechai also has five healthy children. It is his mother who is clinging to life in the ICU. This is the natural order. The old people go first, not the children.
Mordechai tells me that he likes to jog too and that he can wear shorts and t-shirt, sneakers and even a baseball cap. He also tells me how happy it made him, when he was young, to come home to his mother and announce, "I am home!" He loves her dearly. You can see it in him every day and in every action when he is considering his mother. He wants to give her every chance to live. She has been the best mother.
"She is a fighter!" he tells everyone....
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When we get back, I am full of sweat and my clothes are soaking. I ask Mordechai about the shower on the second floor that the maintenance guys showed him and his brothers when they slept for 2 weeks in the waiting room. Could I use it?
We get two towels and walk to the Harkness Pavillion, which is the next building. They are attached by a walking bridge that is above the street at the second floor level. Then we go right just past the social services department. This is an old building.
Mordechai is not allowed to use fire power or electric things especially during Passover. He has to run up the stairs as I take the elevator. He instructs me to go to the 11th floor - that this elevator does not go to the top. You have to walk up the steps to the top. I meet him at the door and discover that it is locked from the stair side so I hold it open. Mordechai runs down one flight to check the door leading into the tenth floor and it too is locked! He is surprised as it was all open before when he and his brothers came here.
He comes back up and we try to figure out what to do next. He sees a service elevator which I go in and it's antiquated but when I press 12, it works! Then I run out and let Mordechai into the hallway past the locked door. One step closer!
Mordechai then sees the lock combination and tries to remember what it was. He tries various combinations, then remembers estatically that it's 6 and 5 together! We are in a dingy place that is mostly abandoned. There are old lockers, very poor lighting, a few things left around. It resembles an old gym locker or something. No one is here.
Then the jewel! An old working shower in one room with soap and shampoo someone has left there and in the next room a toilet and sink. Mordechai is satisfied and leaves.
I can even lock the door because I do hear some faint noises. I take a nice hot shower and get dressed but I hear someone come in and making noise in the alcove so I wait until this person leaves. I do not want to meet up with someone here who I don't know. Mordechai has given instruction that you can leave your wet towels in the red hamper nearby and I find it and leave them.
Days later, I am able to tell Aaron, his brother, the code when he expresses a lamenting desire to shower.....it's 6 and 5 together, 6 and 5 together....
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I went down to Walter's room on Hudson North and discover it is empty. Bed linens stripped, gone. The man visiting the patient in the next bed tells me they left only a short bit before. I walk back to tell Mordechai.
"Ross is gone. I'm really disappointed we didn't get to say goodbye. I really liked him," Ross told us many interesting facts regarding Australia, his homeland.
Mordechai responds, "We were on the bridge. He said he would be here around 1, that's why we missed him."
I am disappointed because Ross was definately a member of our "corner club" for sure....
Then the email arrives....."I'm hoping this is really you Stephanie".....I forward it to Mordechai....
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