Kayla quote: "Mom, where are u?" - Typical text from Kayla to her mom, regarding her whereabouts. Stephanie cannot keep still...
Short Synopsis: Things are progressing incredibly well. Each time one visits Kayla, it seems there is a momentous step forward. They take away another medicine box. They make her walk further. She is allowed to eat more foods. Today's forward motion? She moves out of the intensive care unit! Wowzers!
After 46 days, Kayla has been approved to move out of the intensive care unit! This is truly an incredible thing! Kayla had her nurse call me as I was taking a breather in the cozy corner. The reception phones rings and they call out "Trolle family." I am always nervous when a call comes through, afraid it might be some bad news.
The nurse asks if I want to come in and pack Kayla up. They have a bed for her on the 7th floor in the step-down unit. It's got a view of the Hudson River. There are four beds in this ward room. The patients are inbetween with their need for care, not quite intensive, yet not ready for the floor. There are three levels of care in hospitals - intensive, step-down and regular floor.
This is a special floor for VAD patients. All of the nurses are specialized and know how to handle all situations with the devices that keep hearts pumping. More and more patients are able to live with ventricular assist devices. It used to be that they were used only for a few months as bridges to heart transplant. Elder patients, who are too old for the coveted donor hearts (which they save for the younger ones) are using them as "destination devices." They can walk around for years with them.
The first thing I notice up on this floor is a sweet grandfatherly type, cute as could be, white hair sticking straight up. He is happily walking around with a pouch strapped to his middle. I know this is a left ventricular device and he looks wonderful and he is smiling!
He is someone's grandfather whose death day was postponed. He has a new lease on life and he can be someone's father, someone's husband, someone's grandfather for years more. He is dancing, not walking, his step is light and jovial. I bet he will be released soon to go home.
I tape up Kayla's news clipping and pictures on her wall. I set up her framed photos on the grated metal heater below the window. I place her lotions and special toiletries on her new tray table, her fake and real flowers in key spots, her balloons are afixed to her bedside railing.
Long Story: It continues to rain all the time, for days now. No one knows what the sun looks like, but everything is green, green, green like a jungle. I wake up off the couch in Tarrytown and help Deirdre as she has to get going earlier than usual. I rouse Cole. He is disabled, very sweet, a special treasured child in the family. At the age of 10, he crawls to be with you wherever you are, in whatever room you are in. He cannot speak.
Cole has the best temperment. He wakes up slowly and looks at me with a little trepidation in his eyes. He is legally blind but his vision has improved over the last few years. I pick him up, change his diaper, dress him. He laughs and loves this routine. I comb his black hair, which he does not like. I walk him down the hallway, holding him under his armpits. His body is long and thn. He walks stiffly, but enjoys this routine as well. He knows what to do - one step in front of the other. He calls out with delight. I strap him carefully in his special eating chair and he waits for his milk in a sippy cup. Deirdre has put out his cereal with milk. I spoon feed him his Cheerios.
At 7:15 Ty helps me get him into his special wheel chair to walk him out to his bus, which has stopped at the top of the driveway. There are two women who greet him and we roll him onto the special platform which mechanically lifts him up into the bus. He kicks his feet out and reacts with more laughter. The first time I saw this years before, I cried. I was touched that the workers were full of love for a child who had such limitations in this world.
Back into the house to get Talon to his bus stop, which comes at 7:39 and is down the street. Talon announces to me that he doesn't get dressed until 7:20, that is his regular routine. He relaxes in the morning before school and has breakfast sometimes with Grandpa. Grandpa always sets up his empty bowl on a placemat for him at the ready. Cartoons are a favorite beginning to his day. Today he speeds up his routine, maybe because his mother is not taking him and he's worried if Aunt Stephanie knows what to do.
Deirdre and her husband, Ty, work hard all day long. You have to in order to pay your bills. Their taxes alone for the house are over $20,000 per year. I can't imagine how anyone has any money to do anything, like feed one's family. Westchester County taxes are ridiculous - Connecticut is a little better.
I do three loads of laundry to help them out. Deirdre has her long hours of work. Then she comes home to take care of her children. My mom makes a great meal for everyone. How does Deirdre have any energy left over to do laundry? I love folding clean clothes. It is satisfying for me. Not everyone enjoys doing laundry.
Today the rain pelts down. I am ready to go to the hospital and Talon gets into my car. We get to the bus stop and have lots of time to wait. We have fun watching all the 30 second cat videos I have stored on my cell phone. Talon is laughing at every one. Blue, Rheu, Moo-Moo kitty and Babeee all do their antics and entertain.
The yellow bus pulls up. Talon gets nervous and rushes out of the car. I tell him that he doesn't have to be so nervous as he has plenty of time but he is his own person. There is a boy who is running out of a car and who gets soaked as he jumps up the bus steps.
No wonder America's kids are all overweight. There are four cars and one truck dispensing kids to get up onto this bus. No one walks to bus stops anymore. Are we all really that afraid of letting our kids go to bus stops?
My mother let us be free when I was a child and I am glad she did. No crazy person came to kill us. We survived just fine. In fact, we developed skills to keep us surviving. We knew if someone was weird and we ran away!
I even remember going to high school one day in my nice clothes in the pouring rain. Cynthia and I had a path through the woods down the hill which came out right behind the high school. We even enjoyed races down that path, pushing each other out of the way as we competed to be first. Our house is up on the hill and the high school is down at the bottom.
I was always late running down that dirt path. One time it was pure mud and I fell big time. My entire side and clothes were covered in mud, thick mud all the way from my shoe up to my shoulder.
Miss Dawson yelled at me when I came in late. This time I had an an excuse - "I fell in the mud!" She had some startled expression on her face! And I had no tardy on my record that day! Ha!
Kids learned how to be self-sufficient back in our day. Now they all seem to stay indoors, watching TV, doing video games. Going outside and meandering in the neighborhood is not typical in a lot of places.
It is 7:40 now and the cars are taking turns to follow behind the bus. Everyone is on their way to work. I drive to the Saw Mill Parkway. It takes over an hour to get to the hospital. Traffico!
I am happy to see "the Kayla" in her new surroundings. She can see the outside for the first time in over a month. The water shimmers on the river. The long barges are being pushed down river by the spiffy little tug boats.
Kayla is not happy though. She tells me she has asked to go out on the floor, that she does not like hearing every one's alarm bells, that she feels uncomfortable with men in beds nearby.
I just hope she gets a river view again...
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