Kayla Quote: "I have a lot of bad nightmares!!! and some nights I barely sleep....why can't I go to the other ICU?...they have me on no transplant meds?...was in a 3 week coma, could barely write or move...I want Janelle to wear a mask, just in case as I have had a fever...just in case cuz I love you! and I don't want you to get sick...there is a ice machine Lil' Robertson...go get some ice...it helps...I had that pre-cancer surgery and my heart failed and I was asleep 3 weeks in coma, then woke up here a week ago..scared, pain and upset...." Kayla beginning to communicate via pen on clipboard
Short Synopsis: Kayla is really progressing...at least in the ICU world of blipping machines, artificial devices, feeding tubes, catheters, tweaking of intravenous medicines....small steps forward. She is still on the respirator and cannot get off. She simply is not able to breathe on her own, yet but they feel positively that she will. She just needs time. Her lung injury which she sustained at the time of the cardiac arrest and the ensuing pneumonia has made this impossible. Her lungs can fully recover - they also need time.
The best part is that the P-VAD is working beautifully and fully sustaining her body. Her brain is definitely all there and she is wanting to communicate at all times! Her handwriting is shaky, but legible and each passing hour, it becomes more readable.
Today they surgically implanted the PICC (Peripherally Inserted Central Catheter) line in her right arm.
Long Story: My sister Cynthia and her daughter, Lauren, drove in from the Boston area for a quick 24 hour stay. They wanted to see Kayla. They came to the city with Grandma and visited Kayla early in the morning. I was unable to see them as I arrived soon after they left.
Am not sure I mentioned the Cohen family, who have been here as long as I have. They are Orthodox Jews - three devoted brothers and their Aunt. Their mom had two cardiac arrests over a 3 day period but she is very strong and still alive. The first week they were all here together and sleeping in the waiting room, hardly leaving at all. Their mom's arrests occurred around the same time as Kayla's. Essentially, we are all here in this sad harbor together.
I am often here alone as most of my relatives need to work. The economy is very bad so they are all working even more than before. I wish I could work too, but cannot at the moment, although I have set up two areas of short-term work. I substitute teach swim lessons at the local rec center in order to keep my Water Safety Instructor's license current. I also am signed up to do occasional nanny work, where I can go from home to home and work a day or two. These will suit me for the time being as I care-take Kayla.
We were extremely lucky that she was helped immediately with her cardiac arrest. She really would have dropped down to the floor and would have died in only a few minutes time. There is no quicker way to die than cardiac arrest. It gives me the creeps thinking that her demise was only a few days away. Her heart was a ticking bomb, ready to just flitter and flop with blood flow backing up and stopping.
I am beginning to believe that God has a special plan for Kayla. There is a reason she is still here. I have had many discussions with her regarding this.
"Kayla, I think God wants you to show the world that there should be more organ donors. You have a special way with people and your face is a poster face. Let's get the word out there and not only would we be trying to save your life, we could be helping saves dozens more."
Kayla is too sick and in too much pain to respond. When she was stronger, she was interested in helping others but when you grow weak, you spend most of your time surviving. Her body is too tired.
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It's lonely in this big waiting room. There are cubicle areas with brown plastic leather plush chairs. Some open up as recliners for those who sleep here and many do. I study the other families that come and go. Every day new dramas are unfolding. The people are grief stricken, hollow. Only a few children who are dragged along seem able to laugh and play.
I find those three Cohen brothers. They have taken over the middle section. There are in their clean pressed, white button up shirts, their black long pants,black socks, black shoes. Their hair is neat and cut short. They have black yamacas perched smartly on their heads.
They are laughing and having fun! They are solicitous of the others around them, asking how each family is doing.
I watch them for several days. It is clear to me that this is the family I want to align myself with. By the third day, I go over and begin to say hello. They are incredibly friendly and jovial. I want some of that. Give me some of that!
I am finally in. I can sit in their spare chair and just be quiet. I feel better now. I have someone who can watch my stuff if I go and do things like get a soda or a meal...or even go to the bathroom. I don't have to put on my small backpack, grab up my food bag, hoist up my heavy purse, throw my notebook computer strap over my shoulder, put on my sweater....and drag it all along with me.
I have a ton of stuff with me now. I am a walking house with all that I need. I have become a vagabond....a person without a permanent home. I stay in Tarrytown many nights a week. I stay in Ridgfield the other nights. I stay with cousin Daryl. Everyone is feeding me and taking care of me.
My car, once again, is a mess but I am living out of it with ease. Perhaps this is the life I was meant to live. I have added a big suitcase with a bunch of clothes and shoes and all. I saw others roaming around the hospital with suitcases on wheels....what a good idea. This could simplify it all...but no, it has added one more large, cumbersome bag. I leave it in the trunk of the car and never bring it into the hospital.
For at least a week, I have hung out with my new orthodox family. They live by strict religious rules and I like that. They are polite and respectful along with their playfulness.
One day I arrived and they are gone....
I am desperately bereft!
How stupid was I? I never even got their emails, their telephone numbers, nothing. They had scattered back to where they had come from....Los Angeles, Chicago, Atlanta, Phoenix....Brooklyn.
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This morning I stepped out of the elevator, dragged down by the weight of my daughter's situation and the weight of all my bags. As I step out.....
"Mordechai! You're back!" I couldn't believe it! One of the brothers is standing before me. He has a huge smile on his face. He excuses himself and says he will be back later.
I know what that means. He is visiting his mother in the intensive care unit. He rushes off, but I am satisfied. I search for the best seating spot in the waiting area. The corner is not occupied so I grab the chair against the wall. Opposite me is another chair that I put a sweater on to reserve it for Mordechai.
Sure enough, hours later, he comes and takes over the empty chair. We settle into our new arrangement and the minute he arrives I thank him, jump up, with just one small purse and run out to the street. I leave all my other stuff behind.....I want to purchase a chalk board for Kayla. She is really beginning to write.....
What an incredible day this has become! Twelve people are seeing "the Kayla" today.....Me, Janice, Janelle, Missy, Adam, Erika, Emily, Debra Bel and Sarah, her daughter, Grandma, sister Cynthia, cousin Lauren. Kayla absolutely thrives on loads of people.
They did the surgery on her right arm to put in the PICC (Peripherally Inserted Central Catheter) line. Kayla was frightened. She has been through so much pain. It seems that many of the procedures they do involve much physical pain. She wanted me there so I was allowed to put on a surgical mask as they began to get her ready. I held her soft hand. This procedure was to be done right at the bedside. They just create a sterile environment.
There was a sonogram machine that let the doctors know how her deep veins were doing and which one could be tapped into. The woman doctor told me she originally worked as a surgeon for the Navy. She asked a lot of questions about Kayla and noted that Kayla had very small veins and "cut down scars."
"Yes, those cut downs were from when she was 5-weeks-old. She was in Yale New Haven Hospital with her first heart failure and they needed to get access to her veins. She has cut-down scars on both arms."
"Yes, I see them."
When Kayla was finally out completely from propofol, I was able to leave the room. I would have stayed except it was extremely hot under the mask, with all the equipment generating loads of heat. The sun was coming in the window adding additional degrees.
About an hour later, they informed me that the PICC implant was successful. This line can last up to a year if it is taken care of. It has to be kept clean and clear of infection and it's a great line for intravenous access to her veins.
They would come back in a few hours to check the placement with the sonogram machine. If everything was in a good place, they would pull the central line out of her neck and her neck would be free!
Unfortunately, there was no room in the OR (operating room) for taking out the respirator tube from her mouth and throat. It seems that we always need to wait a few days for time in the OR. When you hear the word "Ad on" - it's not good. It means you have to wait and you still could get bumped. Emergency and trauma operations take over valuable time in the operating rooms but even more importantly, there are simply not enough surgeons. They get booked up quickly.
Also brewing was a huge mat of hair in the back of her head. Something melted her rubber band that was holding a ponytail there and after several weeks had passed, I noticed it when I felt back there, a big un-comb-able mat. With so much going on with her health and more important issues to tend to....well, this would have to wait. It would be hard to access it with the central line in her neck obstructing everything. As soon as that was out, I would tackle the mat with scissors and comb.
Kayla is on high doses of all kinds of narcotics which causes problems. She now has a high tolerance for these drugs and they do not work as well. It all started with Danbury Hospital giving her intravenous dilaudid for migraine pain. Then she needed more and more. Many patients have this problem. For the past week, I was surprised to find that they were decreasing her dosing for several different narcotics as they were giving her methadone for withdrawal. This was working well. Kayla has pain all over her body, especially at sites where there are big tubes and devices implanted into her. Her courage is astounding.
No one has any idea how she is able to live through all of this intense pain and still look forward to seeing her many friends and family. Courage should be her middle name.
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Violet and Bobby, the red-tailed hawks are doing really well. I like to get on the internet and click on the Livestream to see how they are (nytimes/cityroom red-tailed hawks - livestream).
The winds were very high today from the intense storm activity and there was Violet, sitting just like a chicken on her perfect nest. Little bitty feathers were floating all over the top of the nest. Violet's feathers were fluffing up too. She was calm and looking around. Watching the counter is as much fun as watching her. It goes up and down by many numbers. When I first clicked in, it said 1,090....then in 10 seconds, it was 1,079....then 1,100....
Can you imagine that many people watching this calm scene where basically nothing is happening? Over the next few days, this number will rise dramatically. The three eggs are due to hatch soon. Everyone is waiting for the baby birds to peck their way up out of their eggs. I am. New life excites me.
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Kayla would laugh. The cats would not let me sleep all night. They want to go out when they want to go out. Rheuy is the worst. He climbs all over the bedside tables and up on the window ledge high above me. I am afraid he will jump down on my face.
He knocks things over off the table and makes me mad. I yell out at him. The other two cats are just watching. I have strung up the lines that are used to pull up the shades. They have clawed that to get my attention too, but now they cannot reach it.
It is 2:38 a.m. and I am not going to let them out. Coyotes....the fox...whatever. We have our new policy. They must stay in. I get the water spritzer and am ready. I slam closed the bedroom door.
Clawing at the door.....I jump up, open the door and SPRITZ!!!
It's Babee....he is not the culprit. Poor Babeeeeee!!!!
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