Short Synopsis: Regular fare here - 8 hours on the trach collar with a little piped in oxygen and 4 hours in the chair. Her nurse is gentle, quiet and unobtrusive. She is up on everything that Kayla needs done. I tried to come in at 11:30 but they say no because they are putting her in her chair and that's a big painful ordeal. Moving the cables is tricky. Kayla is losing weight so the cannulars going into her body are a little loose at times. Sometimes they need to suture them tighter. She is supposed to wear a special wrap that holds everything in place, but it is uncomfortable so she does not always wear it.
Kayla's biggest frustration is that she cannot talk. She was able to get out a few croaky words for a few days, but now, for some reason, she no longer can. The trach tube must fit tighter making it impossible to speak. She is back to depending on people reading her lips - I am getting pretty good at it. Otherwise, she uses her clip board. She writes legibly in neat rows. I bring many sheets back home and put them up on her dresser for her for later. She is proud of her scribblings.
Regular routines are followed and Kayla is miserable because she wants to be home. Maybe someday soon...
Long Story: When I left late last night, David and his Aunt Debbie were sleeping in our cozy corner. Debbie, in her patterned kerchief, had her legs up on a second chair. Access in the area was blocked. David was in the corner with a blanket over his entire body and head. What a peaceful sleeping family scene. There were other scattered sleepers all over the room, about ten of them.
Problem was I needed my water bottle. I have an used, tall, plastic water bottle that I continually fill up with water to drink all day. This helps save a little money. There is a cooler in the corner and everyone gets water from it but by the end of the day, it is empty.
The bottle was on the short white table back against the wall and there was no possible way to get to it. I would have had to jump over a half wall but even at the wall, there were several sleeping people. I gave up the idea and left.
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In the middle of the day, the phone on the reception desk rings. There are two phones that are our connection to the intensive care units. You can call in for permission to go in. They also can call you giving you permission to come back in after a procedure, etc.. Sometimes they do not want you in there. The receptionist (and there are 2 of them) calls out a family name, like "Trolle family. You can go in now."
This time, she announces to the entire room, "The unit is closed. There will be no visitors at this time." This is the first time this has ever happened and we wonder what is going on.
"Must be some sort of emergency. They must be trying to save a life in there," I say to David. We look at each other with surprise.
Steve comes out and announces that there is a lot of incredible commotion in the bed next to his mother. Before long a huge clan of about 10 people come out to the waiting area and they are extremely stressed and vocal.
Then the head doctor in the unit comes out to talk to them. All we can see is his head of hair above our half wall and the family is gathered around him, all leaning in and listening quietly. I am glad we cannot hear his soft news. This is private and we feel awful.
I see the doctor walk down the hall and his face is full of anguish. His eyes are red. I have watched him for over a month and he is wonderful and now obviously, he has tremendous empathy and compassion.
The father, husband of the woman in the unit bed, is an old man and very darling. Slightly frail, he has white thick hair all fluffed up and a manner that is gentle. He weeps out to the crowd,
"I know she is dying! I just know it."
His daughter is the only other talker, admonishing him,
"Daddy! We cannot give up. Her heart is still going! We need two grandparents, two!"
"She is going!" The two of them keep shouting back and forth.
The rest of our huge crowd is silent and full of grief and the scared family is scattered now, going into the ICU in clusters. The two to a visit rule has been temporarily let go. The old man sits in a different spot every few minutes, not able to go in as much as the rest and he cannot stay still.
The entire place is now under the sad pallor of this group. We are all respectful and quiet.
David says to me, "This is so sad. This could be me!" This could be any of us. We all have critically ill family members in those units, striving every hour for life.
I ask if he wants to go to the boarding house, or wherever it was that his brother, Mordechai, slept each night when he was here last week.
Five years ago on this day, Stephanie Collado, passed away. She was Kayla's dear friend who also had a heart transplant. She and her mother moved to Orlando, Florida. After a while, Stephanie's heart got into trouble and she needed another transplant but she had a cardiac arrest in a Florida hospital and died. I guess they did not have the mechanical devices to save her. I am reminded how lucky Kayla has been. She always seems to land in the right place at the right time.
Mike came to see Kayla and stayed with her from 8 p.m. to midnight. I had no idea he was here. He said he looked into the corner but did not see me. I napped and then he came out and was there! I was happy to see him and we walked to the elevator together. His going home routine is to get coffee from the University Deli in his own mug on his way out.
In separate cars, we drove home. I guess I should have gone to Tarrytown as I was falling asleep at the wheel very early, but like a fool, I kept going. I wanted to be home. There is much to do there. There is also a normal life there...
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In the middle of all this craziness, David and I had a meal together in our cozy corner. I was exhausted and just sitting in my corner chair wondering what to do next. This place is crazy. People in and out with all their loved ones getting heart surgeries and then some of them passing away. More often though, the operations are successful.
I am worn out. I need a good meal. David looks over and offers something from one of his big bags of kosher food that has been delivered to the hospital. They really take care of each other, these Orthodox Jews. There is always plenty of food.
He opens a sack and peers in and is very happy by what is in there. Like a waiter at a restaurant, he sets it all out. Then he realizes he has no plates or silverware, so up one flight he goes to the kosher room, where he fetches plates.
The best food! I had salmon and gefilte fish in tins with a special sauce, which was sorta like a soy sauce. After I had eaten one and enjoyed it, David offered me a second one. This was the same two fishes but a slightly different sauce, as if it was made by two different cooks. A real smorgasbord! We also had kugel, a potato dish.
The two dishes went together very well and it put a nice touch on a sad weeper day...
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In the middle of all this craziness, David and I had a meal together in our cozy corner. I was exhausted and just sitting in my corner chair wondering what to do next. This place is crazy. People in and out with all their loved ones getting heart surgeries and then some of them passing away. More often though, the operations are successful.
I am worn out. I need a good meal. David looks over and offers something from one of his big bags of kosher food that has been delivered to the hospital. They really take care of each other, these Orthodox Jews. There is always plenty of food.
He opens a sack and peers in and is very happy by what is in there. Like a waiter at a restaurant, he sets it all out. Then he realizes he has no plates or silverware, so up one flight he goes to the kosher room, where he fetches plates.
The best food! I had salmon and gefilte fish in tins with a special sauce, which was sorta like a soy sauce. After I had eaten one and enjoyed it, David offered me a second one. This was the same two fishes but a slightly different sauce, as if it was made by two different cooks. A real smorgasbord! We also had kugel, a potato dish.
The two dishes went together very well and it put a nice touch on a sad weeper day...
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