The patients who succeed the best are the ones who work closely and well with the doctor and nursing teams.
Short Synopsis: It's really tough to move forward when you are in constant pain. Kayla has to be one of the bravest people I know. She has become a really great patient, trying her best to follow all the doctor's and nurse's orders. Each morning the teams come by and they put in orders for the day after they analyze the progress of the patient. The look for symptoms and troubleshoot.
With Kayla, it's straightforward in some ways. She is on a few blood thinners so there is tremendous bruising all over her body. At first, it is alarming but this is just part of the landscape. Huge black patches are on her arms, her chest, her legs. Then there are areas that are healing and they are greenish-gray.
There are tubes all over the place running criss-cross across her body. There are leads going to monitors. There are the medicine boxes dripping in special medicines, which are tweaked all the time. Then the big device - the PVAD with the heat producing machine and the clicking cannulars. She is definitely a bionic young lady.
Today a top priority was Kayla's "breathing trials." They take her off the respirator and put a trach collar around her neck with a little oxygen piping in. She has to breath completely on her own. It takes effort and her rib cage sucks in with effort. It looks tiring and is!
"The Kayla" panics and begins to shake her hands and her lips quiver. It's the sweetest thing I have ever seen but it is not fun for her. It is scary to breathe on your own. She has no gag reflex and only a tiny coughing reflex so "suctioning" is needed at times. The nurse inserts a long tube into her throat and suctions it, pulling out flem and fluid. Kayla's face turns red as she tries to catch her breath. It's very disturbing to watch, but it clears the throat pathway.
"The Kayla" also needs to have venadines - inflatable leg holders for her legs to prevent clotting, as her legs have been just laying on the bed for nearly 3 weeks. She does not like these things as they make her more hot. She tends to overheat anyway.
The room is stuffy hot and maintenance is unable to do anything about it. The temperature is completely turned down, but the big machine that pumps for the P-VAD, generates a lot of extra heat in the room. The windows facing the river have a Western view with heat peaking in the afternoon.
Kayla was required to be in the trach collar for a two hour period today but it was difficult for her so she refused. This is considered a refusal of medical treatment, which is why the charge nurse read her the riot act - "You have to let us help you or no transplant." They need compliant patients or there is no success.
Patients need to progress even if they have pain. Things get worse if you don't. Kayla insists she has terrible pain. They had to suture her tubes site as the skin was falling away a bit. She lost a lot of weight which loosened up this skin. CT Surgery needed to come to the bedside and add a stitch or two to prevent oozing of the thinned out blood.
Kayla asks for her mother often. She says I calm her down. Actually I am her advocate who helps her. Patients who succeed are the ones who have a good advocate caretaker. A sick person is too weak to do this for themselves.
When they are doing a sterile procedure at her bedside, I am frequently invited in to assist as her hand holder. I have to wear a mask and I am quiet. This is not for the faint of heart. There is a lot of red blood everywhere. Red is good - it means life!
Long Story: "My mother is fighting! I can't leave my mother!"
Mordechai was excited and fully animated. His mother was completely down from sedation and it has become a wait and see watch. He brings his rituals to her bedside and shares the Passover rites with her. Over time they have taken her down from all the pressors that keep her blood pressure stable. They have given her continuous antibiotics. They are considering a new way to give her dialysis. They are considering doing a tracheostomy. It's interesting how the cardiac patients get similar tests. The machines that do the sonograms, the EKGs, the echocardiograms roll along the floors, going into each room, to test each patient.
The doctors change every few weeks and Mordechai reports that he needs to instruct the new groups regarding his religious beliefs. They have even written a sign which they posted on her wall. They have a DNR (Do Not Resuscitate) order on her, but she hasn't arrested since the second arrest on April 2. She is sleeping peacefully and staying stable.
Mordechai has been talking about the George Washington Bridge for two days now. He wants to walk across it. When I first arrived at the waiting room scene two weeks earlier, I walked around and announced that it would be fun to start an informal walking club.
"We need to stretch our legs," I said. Everyone looked at me like I was insane.
This was when I first met Mordechai. I asked him directly but he answered,
"I cannot leave my mother. I would be too far away and what if something happened?"
I said that probably nothing would, that hours and hours go by with no change. That's been my experience. He just looked at me blankly. I found no takers that day.
Guess I planted an idea...... it happened!
Mordechai announces that he has "walked the bridge." Wowzers - a walker! Yessssss!! Hey maybe we could get some people to go now....great prospects here....
Mordechai announces that he has "walked the bridge." Wowzers - a walker! Yessssss!! Hey maybe we could get some people to go now....great prospects here....
We met some new people - Ross and Daniel. They tried to move into our little corner where we leave stuff all over the chairs to claim it ourselves. We have a lot of fun, placing this piece of clothing, those pair of shoes, a back pack, a food bag, whatever, over our claimed chairs - the good ones that stretch out for sleeping. Mordechai has his towel, his Hebrew bible, his wine, kosher foods, kleenex, black jacket across the back of the chair. His items are very different from my items.
Off topic here...I think the sweetest sound I have every heard in this waiting area was the chanting that he and his brother David (pronounced Dahveed) sang one night together. They were rocking and chanting in Hebrew. Melodious, like a duet in a concert. Funny thought -- they would make great singers in my small country church choir as we are always desperate for male singers, especially good ones!
Off topic here...I think the sweetest sound I have every heard in this waiting area was the chanting that he and his brother David (pronounced Dahveed) sang one night together. They were rocking and chanting in Hebrew. Melodious, like a duet in a concert. Funny thought -- they would make great singers in my small country church choir as we are always desperate for male singers, especially good ones!
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I came in to see Kayla in the ICU after one of my rests and was surprised to see two of her sorority sisters there presenting her with a special blanket they had made. All "the girls" got together and on this plush maroon blanket they sewed patches that were the Greek letters E-A-T. On those white patches they took pens and wrote messages to Kayla. Kayla was incredibly happy and tearful. I left them alone to have their private conversation....I heard "nine girls joined this rush" as I was leaving......
All smiles on "the Kayla" cherubic face.....
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My brother Paul is a food aficionado. No one knows where this came from as everyone else in my family does not live and breathe fancy restaurants. For many years now, when Paul invites you to go out to a special lunch or dinner, you are in for a treat.
He has not been to see Kayla as he and his wife are afraid of hospitals. Can't blame them there. We have members in our family who are "medical" and others who "fainters." Paul is in the fainting category so I forgive him. I figured he would show up at some point.
He came with his best friend Roy. They are quite the pair - my brother, the incredible dentist and Roy, a retired Jewish gentleman. Paul drives Roy's fancy car for Roy whenever Roy needs to go somewhere. They go to Rotary Club events together. Roy is now moving into an assisted living facility and Paul is helping him with the cleaning out process in his old home. Roy has accumulated a ton of stuff over his lifetime. Lots and lots of it is going into the garbage. The new living quarters are only a few blocks away, I think he said it has 109 beds and is exclusive.
Roy is quite debonaire with white hair and a keen mind. He has little family but he doesn't need anyone - he has Paul. Paul would give you the shirt on his back if it was the last shirt he owned. If you said you needed it, he would peel it off and hand it to you. I love my brother and his generous heart.
He informs me we are going out to a really nice restaurant called The River Palm Terrace in Edgewater, New Jersey, a block away from my beloved Hudson River. I am game. Dining out with Paul is a unique experience.
It begins with the parking attendant who takes our car away. I am already feeling special and high class. I hold my head high like I am someone important, a wealthy business woman....ummm...maybe a high class lawyer....
Oh well...I am just a scrabbling, unemployed, advocating mother of a precious critically ill, last chance at life, daughter. Now that is the most important position in the world.
We are ushered to our table and it's beautifully set. Those thick white napkins are fantastic! We order many delights - lobster, clams on the half shell, Alaskan crab legs, special house salads, ice teas (which are charged by the glass - no free refills here)...I get the sesame honey crusted glazed salmon. My brother is clearly disappointed that I didn't want to share a two-person steak with him. He likes to order your food for you and usually I allow this, but I wanted that salmon!
Paul gets the steak and gives me little niblets from it. This is the first time I learn that part of his steak was the T-bone side and the other part was the fillet mignon side. I get a taste from each side.
The hot towels with fresh wedges of lemon were a nice touch. Our waiter was truly professional. The bill? $195.00 for three people, plus Paul wanted to add a $38.00 tip. Now I know why I don't go to these types of restaurants. I would have to rob someone on the street to have that much money for this kind of extravagance. I scrounge for food in my refrigerator to supplement my daily needs at the hospital.
Paul drives me back to the hospital and drops me off at the front door with my doggie bag in hand. I go up to the 5th floor and announce to Mordechai, holding bag in air, that I have dinner for the evening!
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I have never understood why our Fort Lee, New Jersey apartment has held so much sentimentality for Paul, Cynthia and me, the first three born in our family of seven children and two parents. Mom says we only lived there for 1.5 years and it was the smallest apartment you could ever imagine. My Dad was a resident in the orthopedics speciality and he crossed the George Washington bridge every day to continue his training at Columbia/New York Presbyterian Hospital.
I must have lived in this apartment from the age of 5 to 7, which were the years 1957-1959. Since Paul was born in 1956, he could not have had much memory, but amazingly, he does!
We decided we would search for it and go over our memories. He needed me to completely verify if we had the right building. I tell him that the only reason I am able to find it is because Mom brought me here a few years ago. I am surprised that we were only a block from the Hudson River. When you are five, you have no idea where the river is. The building is just one minute from the first exit off the bridge after one enters New Jersey.
We drive around for a minute and I spot it immediately but it's completely different. They have painted the red bricks a beige color. There is a sign that says "Central Court Condominiums" so it is no longer called "The Cliff House." There are green awnings over the step entrances on either side. It is condos and no longer apartment units.
Paul is not at all sure this is the place but I am absolutely positive.
"This is it! I'm absolutely sure." We go into the center entrance to find the business office. When we tell the worker that we lived there in the 1950s, he is thrilled. He says there is one woman who lived here back then and she bought her unit more recently.
Our fondest memory of the place is the superintendent Bill Ulrich. He ran the entire place and he attached himself to our family as he had no relatives of his own. As you enter the center part, his apartment was one flight down a few cement steps with a sub-basement apartment on the left. It is still the supers apartment today. At the age of 6, I would go and have a cup of tea with Bill in his apartment and then he would allow me to scramble all around the large pipes in the off limits mechanical room across from his apartment front door. I would run all around in there as he fixed things. He was like a grandfather for me. He brought gifts for all of my siblings but had a special relationship with me that lasted until his death many years later.
When I was just past college, I went to find him in the rural part of New York state near Oneonta. He had actually willed me a 1949 Cadillac that he was very proud of. As he lost his vision, he crashed it and destroyed it, but I didn't care. It was him I cared about. I drove up and down deserted country roads and in the distance I saw a man with bowed legs proudly walking along. I knew instantly it was him and he was happy to see me. He called me Dafney as he never really could say the name Stephanie.
He invited me to his modest home. He was very happy and had finally married late in life to an elderly woman. He showed her off to me. She was sitting meekly in a wheelchair. Then he asked me to reach up to the top of the refrigerator and pull down a shoe box, which I did. He opened it up and took out a Valentine Card which had been drawn by a child and decorated with glue and glitter. He told me that it was from me. I cried as I held it in my hands...
Paul wanted to see the railing where he got his head stuck. He said he wanted to get a toy that he had dropped down to the ground and he thought he could reach through the railing to get it. His head got stuck. Dad got some soap and soaped up Paul's head and squeezed it through. None of us kids every forgot this event. Adult Paul poised once again behind the exact same railing his head was stuck in. I took a cell phone picture.
Paul remembered how we used to get stuck in the elevator because we could not reach the button which brought us to our floor. We would wait for someone to come into the elevator to help us. I could reach the button to get us to the bottom floor but not to get us back up.
As we walked back to the car, I pointed out the exact spot on the sidewalk where Cynthia and I were marveling at a most beautiful caterpillar full of many colors. We were watching it go by and along came Paul.
"I've never forgiven you for stomping your foot on it. You killed it!"
And Paul?
He is still not apologetic.....
He has not been to see Kayla as he and his wife are afraid of hospitals. Can't blame them there. We have members in our family who are "medical" and others who "fainters." Paul is in the fainting category so I forgive him. I figured he would show up at some point.
He came with his best friend Roy. They are quite the pair - my brother, the incredible dentist and Roy, a retired Jewish gentleman. Paul drives Roy's fancy car for Roy whenever Roy needs to go somewhere. They go to Rotary Club events together. Roy is now moving into an assisted living facility and Paul is helping him with the cleaning out process in his old home. Roy has accumulated a ton of stuff over his lifetime. Lots and lots of it is going into the garbage. The new living quarters are only a few blocks away, I think he said it has 109 beds and is exclusive.
Roy is quite debonaire with white hair and a keen mind. He has little family but he doesn't need anyone - he has Paul. Paul would give you the shirt on his back if it was the last shirt he owned. If you said you needed it, he would peel it off and hand it to you. I love my brother and his generous heart.
He informs me we are going out to a really nice restaurant called The River Palm Terrace in Edgewater, New Jersey, a block away from my beloved Hudson River. I am game. Dining out with Paul is a unique experience.
It begins with the parking attendant who takes our car away. I am already feeling special and high class. I hold my head high like I am someone important, a wealthy business woman....ummm...maybe a high class lawyer....
Oh well...I am just a scrabbling, unemployed, advocating mother of a precious critically ill, last chance at life, daughter. Now that is the most important position in the world.
We are ushered to our table and it's beautifully set. Those thick white napkins are fantastic! We order many delights - lobster, clams on the half shell, Alaskan crab legs, special house salads, ice teas (which are charged by the glass - no free refills here)...I get the sesame honey crusted glazed salmon. My brother is clearly disappointed that I didn't want to share a two-person steak with him. He likes to order your food for you and usually I allow this, but I wanted that salmon!
Paul gets the steak and gives me little niblets from it. This is the first time I learn that part of his steak was the T-bone side and the other part was the fillet mignon side. I get a taste from each side.
The hot towels with fresh wedges of lemon were a nice touch. Our waiter was truly professional. The bill? $195.00 for three people, plus Paul wanted to add a $38.00 tip. Now I know why I don't go to these types of restaurants. I would have to rob someone on the street to have that much money for this kind of extravagance. I scrounge for food in my refrigerator to supplement my daily needs at the hospital.
Paul drives me back to the hospital and drops me off at the front door with my doggie bag in hand. I go up to the 5th floor and announce to Mordechai, holding bag in air, that I have dinner for the evening!
---------------------------------------
I have never understood why our Fort Lee, New Jersey apartment has held so much sentimentality for Paul, Cynthia and me, the first three born in our family of seven children and two parents. Mom says we only lived there for 1.5 years and it was the smallest apartment you could ever imagine. My Dad was a resident in the orthopedics speciality and he crossed the George Washington bridge every day to continue his training at Columbia/New York Presbyterian Hospital.
I must have lived in this apartment from the age of 5 to 7, which were the years 1957-1959. Since Paul was born in 1956, he could not have had much memory, but amazingly, he does!
We decided we would search for it and go over our memories. He needed me to completely verify if we had the right building. I tell him that the only reason I am able to find it is because Mom brought me here a few years ago. I am surprised that we were only a block from the Hudson River. When you are five, you have no idea where the river is. The building is just one minute from the first exit off the bridge after one enters New Jersey.
We drive around for a minute and I spot it immediately but it's completely different. They have painted the red bricks a beige color. There is a sign that says "Central Court Condominiums" so it is no longer called "The Cliff House." There are green awnings over the step entrances on either side. It is condos and no longer apartment units.
Paul is not at all sure this is the place but I am absolutely positive.
"This is it! I'm absolutely sure." We go into the center entrance to find the business office. When we tell the worker that we lived there in the 1950s, he is thrilled. He says there is one woman who lived here back then and she bought her unit more recently.
Our fondest memory of the place is the superintendent Bill Ulrich. He ran the entire place and he attached himself to our family as he had no relatives of his own. As you enter the center part, his apartment was one flight down a few cement steps with a sub-basement apartment on the left. It is still the supers apartment today. At the age of 6, I would go and have a cup of tea with Bill in his apartment and then he would allow me to scramble all around the large pipes in the off limits mechanical room across from his apartment front door. I would run all around in there as he fixed things. He was like a grandfather for me. He brought gifts for all of my siblings but had a special relationship with me that lasted until his death many years later.
When I was just past college, I went to find him in the rural part of New York state near Oneonta. He had actually willed me a 1949 Cadillac that he was very proud of. As he lost his vision, he crashed it and destroyed it, but I didn't care. It was him I cared about. I drove up and down deserted country roads and in the distance I saw a man with bowed legs proudly walking along. I knew instantly it was him and he was happy to see me. He called me Dafney as he never really could say the name Stephanie.
He invited me to his modest home. He was very happy and had finally married late in life to an elderly woman. He showed her off to me. She was sitting meekly in a wheelchair. Then he asked me to reach up to the top of the refrigerator and pull down a shoe box, which I did. He opened it up and took out a Valentine Card which had been drawn by a child and decorated with glue and glitter. He told me that it was from me. I cried as I held it in my hands...
Paul wanted to see the railing where he got his head stuck. He said he wanted to get a toy that he had dropped down to the ground and he thought he could reach through the railing to get it. His head got stuck. Dad got some soap and soaped up Paul's head and squeezed it through. None of us kids every forgot this event. Adult Paul poised once again behind the exact same railing his head was stuck in. I took a cell phone picture.
Paul remembered how we used to get stuck in the elevator because we could not reach the button which brought us to our floor. We would wait for someone to come into the elevator to help us. I could reach the button to get us to the bottom floor but not to get us back up.
As we walked back to the car, I pointed out the exact spot on the sidewalk where Cynthia and I were marveling at a most beautiful caterpillar full of many colors. We were watching it go by and along came Paul.
"I've never forgiven you for stomping your foot on it. You killed it!"
And Paul?
He is still not apologetic.....
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