Short Synopsis: No go on getting off the respirator again. They say she is simply not ready. They say she is not completely awake or following commands. They are absolutely shutting off all the sedation now. They want to see how her brain is affected.
At 3 pm, Columbia called me and got permission to do a tracheostomy. They will cut a hole in her throat and put in a breathing tube that way. This will open up her throat again and release her vocal chords, which get inflamed from having a tube down in between them. No one is happy here in the Trolle household.
They have tried several times to get her to breathe on her own. No go....no go.
Long Story: A mother's love is the strongest thing in the world. I am asking all over about her brain. I am crying a lot. My husband is very sad. Our son is very sad. This is the old merry-go-round. One day they do well. The next day they have a problem. It's a long, slow process...this healing thing.
I stay away as she is sleeping and she is restless when she is awake. I need rest. I practice my music for the chorale show all the time. I sing on the way into New York with the CD in as I am driving. It's a one hour drive so I sing and sing. Many songs are happy so my mood is lifted. This is going to be our best show ever - it's called "Doin' Time" - a jail theme. We are singing many wonderful old standards. The song list includes "Diamonds Are a Girl's Best Friend," "Jailhouse Rock," "Rehab," "The Joint Is Jumping," "Chain of Fools," and "As Time Goes By."
Our new stage manager, Steve, is remarkable and adding many new things to our show. We now sing and dance and do dialogue. No longer are we just up there like zombies singing. Daniela, our director, is phenomenal. She teaches us all the time. Musically, everyone learns at every practice. All 70 of the singers are motivated and excited as we work in a great direction together of producing a wonderful show. We only do it once and we can't wait! April 30th - here we come.
So I am a desperate mother who has a daughter clinging on to life in the intensive care unit. I am also a singer who loves the theater and entertainment.
After chorale practice, I am energized. Every Thursday night I head over at 9:30 to Junmai Japanese Restaurant for their Thursday night karaoke. I meet Jeff and Daniel and it's uplifting. I have creative freedom here. I also have a big group of friends. We all have a wonderful time together because we love to sing.
Some can't even carry a tune, but it doesn't matter. In karaoke, you clap for everyone. You especially clap for the ones who are the most scared, for the ones who get up there for the very first time. They are shaking. They are nervous but they have stepped up to the plate and they sing. You are polite and listen. Then you encourage them with a big round of applause.
I have been practicing for months at this craft. Karaoke is my favorite singing venue. I sing in a small church choir, which is terrific. I sing in the chorale, which is challenging.....and I sing at Junmai, which is creative. I am a big wheel there. I have a small book with all of my favorite rock tunes written down. I keep adding to this list each week. I look for duets for me and Jeff to sing. We enjoy doing one of our favorites "Summertime" by John Travolta and Olivia Newton John. Another favorite is "Don't You Want Me Baby" by Human League which I sing with David.
Jules and David in our group. Each week I look forward to seeing these people, my karaoke club friends. At 11 pm or so, the young crowd comes in from the Bissell House after they finish their waittering and bus boys duties. They are energetic and full of youthful brash. We enjoy interacting with them and choosing some tunes to do with them.
I have gotten people to sing together in duets and groups of 3, 4 or more. I have set up background singing also. Before I came to the scene, they all mostly doing singles work. I watched that for 2 weeks and found it boring, so I implemented change. Perhaps they were doing more, not sure.
Jim really likes my singing. He is from Portchester, NY, but he comes all the way up to Connecticut to be with us. I do a number with Jeff and I add additional background vocals in areas no one has ever gone. I have this weird talent to do this. I don't know where it came from, but I do it with ease. A certain song will trigger this and I take off. I can hear the notes and I can be spontaneous. I have never been with a singing group that will let me use this talent, but here at Junmai, I do what I want.
My thoughts never stray far from my daughter. I am her biggest worshiper. I am in her special web. She has her own special talent. Kayla brings people together. She always did. I think she has 1,400 Facebook friends. She calls my sisters and cousins and puts us together for lunches down at the Early Bird. We love our breakfast food and conversation.
I would hardly ever call my sisters. I love them but I have a life in Ridgefield and they are far away. It doesn't matter to Kayla where they are. She calls and lets them know we are gathering for lunch, but now she is silent. Kayla, our glue, is busy trying to survive.
I know she will be in the ICU for at least a month. They told me so. She will not remember any of this. Even though we are talking to her and she is waking up, she will not remember that either. Her body is in limbo. It is healing.
I keep telling her over and over again that I love her...I get close to her ear. I kiss her face.
"The operation was successful, very successful. There was no cancer. None. They took out all the cell mass, but you had a little problem with your heart...." That is all I tell her. I keep the hard part simple.
Kayla is not a cry baby, not like me. I cry easily. If there is a sensitive scene in a movie and I am moved, I cry. Kayla looks over at me. She is on one couch and I am on another.
"MOM!" She laughs at me. I look at her serious face and wonder why she does not cry.
But, we are driving down Route 35. We are on our way to the hospital for the surgery. It is March 30th and they want her there for pre-testing. She doesn't want to go. We are almost at the entrance to Route 684 to head south to the city.
I look over and Kayla is crying. There is a simple tear or two dropping down her cheek.
"Kayla...."
"I'm only scared of one thing, Mom."
"What?"
"If I have cancer I don't want to die a long, slow, painful death," she whispers. Her tears are already over.
"Don't worry. I won't let that happen," I tell her. I think of when I begged the nurse to give Alyssa, my youngest daughter, more morphine to ease her into her death. And the nurse said she already had enough and I got aggressive. I can tell she is in pain...damn it...give her more. A few minutes later, the nurse says the doctor said it was alright. It is August, 1988....Alyssa was so small, only 9 months old, but the squeeze in her hand as she held mine, told me she was in pain.
"Kayla....you are going to be fine. I don't think they will find any cancer. I feel positive about all this."
She was silent for a long time. She likes to listen to music and not talk as we drive to New York and we drive often to make our way to see the doctors. We make the left to New York City... it seems the car is on auto-pilot...we have made this trip many times before.
I have this one big wish. I want Kayla's many friends, and she has dozens, to come, small groups at a time. I want them to cover her so she is not alone. Kayla does not like being alone. If there are people there she is happy. She laughs. She interacts. She is calm, no matter how much physical pain she is in and she has chronic pain, every day. I know no one who has been through as much as "the Kayla."
I wish Greg would come and see her. He is a very special human being. One day, in my kitchen, a challah (braided bread) arrived. Kayla told me her friend, Greg, baked it.
"You would like him, Mom. He's a nice Jewish boy, the kind you like." It's been a joke in our family, how I like "nice Jewish boys." I was born a Catholic and am now a Protestant but Jewish boys? They are the best! Greg is a friend, a person who truly cares, the best thing for anyone. Kayla is careful now - no boyfriends for the moment. She is too tired and weak for any relationship. Her heart is near collapse. All three of the coronary vessels are fully occluded now...it is very dangerous. She could collapse any moment.
But, Greg appeared at our door. He is not afraid. He has kindness. He comes to be a friend.
When he is around, my daughter laughs and has fun. She can barely get off the couch anymore. She gets up from her sleep and slowly gets out of her bed at 1 pm and I make her oatmeal. That is the one thing she has been able to eat. We each have a bowl together with lots of brown sugar on top. Then she goes to the couch to rest. She is already tired again and it's only been an hour into her new day. Then she sleeps the rest of the day. Very few come to see her...but, Josh comes and he is sweet.
Kayla's friends are young and on the move and she can no longer keep up with them. They move from place to place, from club to club, from house to house. Being young is special and wonderful but not so wonderful when you are sick and can not keep up. Kayla is lonely and sad.
"They won't come see me anymore," she laments....
"They have their lives," I tell her. "We can call them and invite them one at a time maybe..to the house."
- - - - - - - - - - - - -
Back in the ICU, Kayla is spiking a fever, it's 102. It's 103. They tell me she has pneumonia. The doctor in the ICU is non-plussed about it. It can be a normal state of affairs for the critically ill with heart problems. They use many different antibiotics to combat it. Kayla is on a cooling blanket. When you reach under her back, it is cold everywhere. Her heart races. She is lethargic.
The extubation is still a no-go. She continues to fail the test. She is still not fully awake. They need to use many pain relieving medicines to help her with her chest pain - her breast bones were stapled only a few days after all.
At 3 pm, Columbia calls to get permission for the tracheotomy and I ask questions. There are many problems that could come up if they leave her with a regular breathing tube. They need to get it out. At least with the trach, it is safer and she can take her time learning how to breathe again. The lungs, vocal chords and throat need to be freed.
-----------------------------
I drive into our driveway at 9:30 and am at the top of our circular driveway. I keep my car lights on and then turn on the brights. Little baby foxes are looking over at me. Their eyes are glistening. I am very excited. The fox kits!
I call Mike. I can see the light is on in the living room. How silly....I am whispering.
"Mike, come on out. The fox kits are out playing! And bring the binoculars and come and sit in the car with me! And come slowly....no quick movements! I have the bright lights on them."
The babies are startled by my lights. They stop for a moment and look over, studying the distraction. Mama Fox comes out of nowhere and looks over with a concerned stare. She was in the dark and then instantly, she was in the light. She pauses for only 10 seconds and then she is out of the spotlight, off hunting.
Rheu is sitting up on the sidewalk, looking over at them too... Our outdoor Rheuy.....he hates being locked up the most out of the three cats...and they were locked in for 2 days.
Mike comes and sits next to me in the passenger seat in the dark. We pass the binoculars back and forth and enjoy the rolling babies. They are very small and look like they have porous bones. They are brown and blend into the scenery. One is chewing on some small rodent that Mom has brought it, but he loses interest, drops it and plays some more.
They rush up through Alice's yard. They rush back. One goes under the shed. Then there are four of them back and forth, back and forth. Play, play, play.
I call Steve, "They are foxes - you're right. I'm not worried. Tell Alice they are playing in the back yard right now. Right by the shed." I hang up.
Don't tell the Kayla! She really would freak! My cats she would say!
Some can't even carry a tune, but it doesn't matter. In karaoke, you clap for everyone. You especially clap for the ones who are the most scared, for the ones who get up there for the very first time. They are shaking. They are nervous but they have stepped up to the plate and they sing. You are polite and listen. Then you encourage them with a big round of applause.
I have been practicing for months at this craft. Karaoke is my favorite singing venue. I sing in a small church choir, which is terrific. I sing in the chorale, which is challenging.....and I sing at Junmai, which is creative. I am a big wheel there. I have a small book with all of my favorite rock tunes written down. I keep adding to this list each week. I look for duets for me and Jeff to sing. We enjoy doing one of our favorites "Summertime" by John Travolta and Olivia Newton John. Another favorite is "Don't You Want Me Baby" by Human League which I sing with David.
Jules and David in our group. Each week I look forward to seeing these people, my karaoke club friends. At 11 pm or so, the young crowd comes in from the Bissell House after they finish their waittering and bus boys duties. They are energetic and full of youthful brash. We enjoy interacting with them and choosing some tunes to do with them.
I have gotten people to sing together in duets and groups of 3, 4 or more. I have set up background singing also. Before I came to the scene, they all mostly doing singles work. I watched that for 2 weeks and found it boring, so I implemented change. Perhaps they were doing more, not sure.
Jim really likes my singing. He is from Portchester, NY, but he comes all the way up to Connecticut to be with us. I do a number with Jeff and I add additional background vocals in areas no one has ever gone. I have this weird talent to do this. I don't know where it came from, but I do it with ease. A certain song will trigger this and I take off. I can hear the notes and I can be spontaneous. I have never been with a singing group that will let me use this talent, but here at Junmai, I do what I want.
My thoughts never stray far from my daughter. I am her biggest worshiper. I am in her special web. She has her own special talent. Kayla brings people together. She always did. I think she has 1,400 Facebook friends. She calls my sisters and cousins and puts us together for lunches down at the Early Bird. We love our breakfast food and conversation.
I would hardly ever call my sisters. I love them but I have a life in Ridgefield and they are far away. It doesn't matter to Kayla where they are. She calls and lets them know we are gathering for lunch, but now she is silent. Kayla, our glue, is busy trying to survive.
I know she will be in the ICU for at least a month. They told me so. She will not remember any of this. Even though we are talking to her and she is waking up, she will not remember that either. Her body is in limbo. It is healing.
I keep telling her over and over again that I love her...I get close to her ear. I kiss her face.
"The operation was successful, very successful. There was no cancer. None. They took out all the cell mass, but you had a little problem with your heart...." That is all I tell her. I keep the hard part simple.
Kayla is not a cry baby, not like me. I cry easily. If there is a sensitive scene in a movie and I am moved, I cry. Kayla looks over at me. She is on one couch and I am on another.
"MOM!" She laughs at me. I look at her serious face and wonder why she does not cry.
But, we are driving down Route 35. We are on our way to the hospital for the surgery. It is March 30th and they want her there for pre-testing. She doesn't want to go. We are almost at the entrance to Route 684 to head south to the city.
I look over and Kayla is crying. There is a simple tear or two dropping down her cheek.
"Kayla...."
"I'm only scared of one thing, Mom."
"What?"
"If I have cancer I don't want to die a long, slow, painful death," she whispers. Her tears are already over.
"Don't worry. I won't let that happen," I tell her. I think of when I begged the nurse to give Alyssa, my youngest daughter, more morphine to ease her into her death. And the nurse said she already had enough and I got aggressive. I can tell she is in pain...damn it...give her more. A few minutes later, the nurse says the doctor said it was alright. It is August, 1988....Alyssa was so small, only 9 months old, but the squeeze in her hand as she held mine, told me she was in pain.
"Kayla....you are going to be fine. I don't think they will find any cancer. I feel positive about all this."
She was silent for a long time. She likes to listen to music and not talk as we drive to New York and we drive often to make our way to see the doctors. We make the left to New York City... it seems the car is on auto-pilot...we have made this trip many times before.
I have this one big wish. I want Kayla's many friends, and she has dozens, to come, small groups at a time. I want them to cover her so she is not alone. Kayla does not like being alone. If there are people there she is happy. She laughs. She interacts. She is calm, no matter how much physical pain she is in and she has chronic pain, every day. I know no one who has been through as much as "the Kayla."
I wish Greg would come and see her. He is a very special human being. One day, in my kitchen, a challah (braided bread) arrived. Kayla told me her friend, Greg, baked it.
"You would like him, Mom. He's a nice Jewish boy, the kind you like." It's been a joke in our family, how I like "nice Jewish boys." I was born a Catholic and am now a Protestant but Jewish boys? They are the best! Greg is a friend, a person who truly cares, the best thing for anyone. Kayla is careful now - no boyfriends for the moment. She is too tired and weak for any relationship. Her heart is near collapse. All three of the coronary vessels are fully occluded now...it is very dangerous. She could collapse any moment.
But, Greg appeared at our door. He is not afraid. He has kindness. He comes to be a friend.
When he is around, my daughter laughs and has fun. She can barely get off the couch anymore. She gets up from her sleep and slowly gets out of her bed at 1 pm and I make her oatmeal. That is the one thing she has been able to eat. We each have a bowl together with lots of brown sugar on top. Then she goes to the couch to rest. She is already tired again and it's only been an hour into her new day. Then she sleeps the rest of the day. Very few come to see her...but, Josh comes and he is sweet.
Kayla's friends are young and on the move and she can no longer keep up with them. They move from place to place, from club to club, from house to house. Being young is special and wonderful but not so wonderful when you are sick and can not keep up. Kayla is lonely and sad.
"They won't come see me anymore," she laments....
"They have their lives," I tell her. "We can call them and invite them one at a time maybe..to the house."
- - - - - - - - - - - - -
Back in the ICU, Kayla is spiking a fever, it's 102. It's 103. They tell me she has pneumonia. The doctor in the ICU is non-plussed about it. It can be a normal state of affairs for the critically ill with heart problems. They use many different antibiotics to combat it. Kayla is on a cooling blanket. When you reach under her back, it is cold everywhere. Her heart races. She is lethargic.
The extubation is still a no-go. She continues to fail the test. She is still not fully awake. They need to use many pain relieving medicines to help her with her chest pain - her breast bones were stapled only a few days after all.
At 3 pm, Columbia calls to get permission for the tracheotomy and I ask questions. There are many problems that could come up if they leave her with a regular breathing tube. They need to get it out. At least with the trach, it is safer and she can take her time learning how to breathe again. The lungs, vocal chords and throat need to be freed.
-----------------------------
I drive into our driveway at 9:30 and am at the top of our circular driveway. I keep my car lights on and then turn on the brights. Little baby foxes are looking over at me. Their eyes are glistening. I am very excited. The fox kits!
I call Mike. I can see the light is on in the living room. How silly....I am whispering.
"Mike, come on out. The fox kits are out playing! And bring the binoculars and come and sit in the car with me! And come slowly....no quick movements! I have the bright lights on them."
The babies are startled by my lights. They stop for a moment and look over, studying the distraction. Mama Fox comes out of nowhere and looks over with a concerned stare. She was in the dark and then instantly, she was in the light. She pauses for only 10 seconds and then she is out of the spotlight, off hunting.
Rheu is sitting up on the sidewalk, looking over at them too... Our outdoor Rheuy.....he hates being locked up the most out of the three cats...and they were locked in for 2 days.
Mike comes and sits next to me in the passenger seat in the dark. We pass the binoculars back and forth and enjoy the rolling babies. They are very small and look like they have porous bones. They are brown and blend into the scenery. One is chewing on some small rodent that Mom has brought it, but he loses interest, drops it and plays some more.
They rush up through Alice's yard. They rush back. One goes under the shed. Then there are four of them back and forth, back and forth. Play, play, play.
I call Steve, "They are foxes - you're right. I'm not worried. Tell Alice they are playing in the back yard right now. Right by the shed." I hang up.
Don't tell the Kayla! She really would freak! My cats she would say!
Kayla has always been a joy whether it was doing girl scouts or being classmates at Scotland way back in the day. She has always brought sunshine to the lives of those who know her. I unfortunately just found out yesterday about all this, but Kayla and your family are now all in my prays. Also, thank you for keeping this blog updated as it let's me know what's happening from so far away.
ReplyDeleteStephanie - my mom and I will be at Columbia tomorrow. I have an MRA at 5pm. Would evening be okay for a visit, after I finish up?
ReplyDelete