Short Synopsis: Loneliness is a terrible thing. Kayla feels it when she does not have people with her. I feel it when my corner's inhabitants are dispersing and leaving for good. Arnold's wife passed away so he is gone. Steve has to get back to work in Washington, D.C. Aaron, Mordechai and David have families and work in Chicago, Atlanta and Phoenix.
Unfortunately, Kayla has a lot of pain today. She needs more drugs to help her combat the pain. She wants me to leave, but I am supposed to bring her some food. It is very hard on me. I told her that I would go out to the waiting room and wait for her to change her mind, that I would still go and get her food on the street.
"If you want food, I will bring it to you. I love you," I say as I leave.
She needs to have the sutures out - they are causing trouble. There is oozing and pink areas where the stitches are pulling on her skin. We are begging surgery to come and fix this problem.
Long Story: After a short while, Kayla texts me that she would like a baked potato and a smoothie. I happily go out and get it for her. When I get to Starbucks, they tell me they have no more bananas. Determined, I tell them I am going out on the street and buying a banana from one of the nearby carts. I will bring it back for them to make the smoothie.
"This is for a heart transplant patient. I need to get her good nutrition as she waits for another heart." I am not about to settle for a smoothie that has no banana in it. The young man is agreeable and says fine.
I find a 50 cent banana at the Jou Jous Cafe just inside the Children's Hospital. I walk back with it and the young man apologizes.
"I found the box with the supply of bananas. We had them after all." After that, he gives me a free smoothie!
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My belief is that Kayla is in the 1% of patients who feels extreme pain. Others feel very little pain but not Kayla. Psych is now considering a hypnotist along with us, but there seems to be no response from the alternative therapy department. No one answers their phone. Everyone says it is a great idea, yet there is no concrete action. More and more, we need to consider our own local hypnotist, or there will be no alternative attempt at management of her pain.
I left at 7:45 p.m. - I just could not bear watching her in pain anymore. It was exhausting. I sent her a text that I was going home - "I think I will head home - r u ok?"
Kayla calls crying, "Please come back!" I have nothing left. I call Mike. He has nothing left. We know that Kayla wants to be home, out of pain, and with her cats.
I call Missy Main. It is her night off and she says she will go see Kayla. I text Kayla - "Missy Main is coming down :)" Kayla calls me back.
"I told her you now have a speech button and can talk."
"It's too late Mom. I feel bad. It's 9:30 By the time she gets here, it will be 10:30."
"Oh, is is really 9:30? I've lost track of the time." We hang up.
Then I text her again - "Why don't you just text her?"
Kayla calls back one more time, "Thank you Mom."
"Kayla, I will stay on the phone with you, but I want to talk to your nurse! I want surgery there to take out those staples. I am so proud of you Kayla. You've come so far."
Kayla is crying, "I don't feel like it."
"Oh no, you have just a little more and then you will come home. I know you will. You are amazing."
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Beth and Steve's mom is having a hard time. I see them briefly. They start to walk to our corner and I inform them that a phone call came through at the reception desk for them. They turned around and ran into the ICU. That was it for the day with them!
All I know is that there are seven doctors and nurses around her bed tending to her. Even her life long friend and doctor, a cardiologist, from Sloan Kettering is in there. They are conferencing about what to do next. She is an amazing woman, the only one here at Columbia to have the latest new device implanted in her, keeping her heart going. She is a true pioneer willing to try new devices. I am awestruck.
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I visit Judith Cohen, - Aaron, Mordechai and David's mother. There is no one left in her family to be with her. I like what I see and taped to her bedside railing, at her eye level, is a touching picture of her three sons in their black wide brimmed hats. They are smiling. They are young. They have all the promise of life ahead of them...
From: Dovid Cohen
Subject: Apologies
Date: Thursday, May 12, 2011, 11:04 p.m.
First I would like to thank you for including me in the "corner." It helped immensely in getting through the week. Second, my daughter loved that skirt and sweater!
Please accept my apologies for what seemed like my leaving abruptly. While you were buying your soda I went to check on mom to see about that MRI. When I got back to her room it was empty! They had taken her without notifying me...They told me that she was taken about an hour ago...I got my stuff together and went down to the basement to at least see her before I left. Alas, G-d had other plans and I never got to see her or find out results. Again, I'm sorry.
I hope the road ahead for Kayla is a smooth ride. She's great and her parents aren't too shabby either.
I will keep in touch.
Dovid Cohen
On Friday, May 13, 2011 at 12:26 p.m., Stephanie Trolle wrote:
Dovid:
We really miss you in our "cozy corner." I figured something was up because you did not sign the sympathy cared for Arnold. I signed it for you and your brothers. It is not the same without your mischevious playfulness and stories. In fact, it is positively boring. New families are coming and going at lightening speed, but we have not invited anyone new yet to join us. We don't have a guard now, watching this corner, so who knows if someone will move our stuff or not? I do see people talk about moving other people's stuff. In the end, all I truly care about is how our loved ones are doing.
Lynda Black and her son Eric came back for one day - their dad Fred was impacted. They solved this in less than 24 hours - he was transported last night back to his rehab facility near Pomona, NJ
Steve and Beth are very stressed. Their Mom is having some difficulties. She got pneumonia and an infectin in her A-line. Back on the full respirator. She is scared but now down on secdation so they can not talk to her. Steve drove up last night, straight from D.C. to be with Beth. Bob drops off Beth here for each day. Have not seen them. Pray for them.
Kayla's VAD machine lost battery power yesterday - what a fiasco!...the blog site is offline as they are having maintenance troubles. Two days! ....
And now your Mom, Ima. I went to see her this morning and spent about 20 minutes with her. She was resting and was peaceful. She knew there were voices in the room and reacted when she heard me talking with the nurse. I told the nurse I was a friend of the family and would come to keep her company at times.
Very good care - everything clearn. Her heart rate was 78 - strong as a horse! Her respirations perfect, blood pressure great also. She does have a very strong body. I talked to her the entire time (not hard for me, the talker!) I told her that she has raised the best sons, who are contributing to the world and how they are devoted to their families. I asked if she was comfortable and I stroked her arms and forehead and hair. I could tell she was happy to have someone with her.
I did not tell her I wasn't Jewish! I was wearing my brand new bright red outfit that makes me stand out. I didn't tell her that in my upbringing, standing out is important to let the world know you want to be noticed. I didn't tell her that I want to be noticed now more than ever to get a heart for my daughter. I am wearing my "Donate Life" buttons all the time and give out notices to get followers for the blog. I didn't even mention my Kayla at all to Ima, but next time I will talk about her.
I nearly cried when I saw that sweet old picture of the three of you in your black hats. That spawned additonal conversation as I told her it was there and how Dovid is starting a new campaign to lose weight and get healthier. I detailed how you were eating a lot more fruit. I said you were walking. I told her you want to move your family so your children could get a better education. The more I talkde about you three, the more she reacted, but she did not open her eyes. I told her that a woman named Beth would come and see her also and that I would be back again.
The only think I didn't like was that her hands were swolen. Is this new? She is retaining fluids in her hands so ask about that. Did you get the report on her brain yet?
Anyway, hope all is well in your home life.
Regards,
Stephanie
P.S. I am disappointed that I cannot really train for my triathlon. I missed swimming on Monday 1/2 mile; swim exercise class on Wed night and long distance biking on Thursday night with my best friend, Kathy. I may not compete. I think I will take it one day at a time and decide later. Heck, I will still try to train and decide in June if I will do it or drop out.
My bike shop went out of business just a few weeks ago - bad economy. I don't even have my favorite experts to condition my bike, oil it, etc...
Am looking forward to working with my son tomorrow morning with a wood splitter on my friend's property. She is paying Thomas $50/hour for his physical ability to work with large logs. After we do 2 hours of work there, she is allowing us to take the splitter to our land and do some of our logs...I love working with my son! Not sure what Mike is doing - he works harder than anyone I know.
Dovid - Not too many sweets! Keep walking!
On Friday, 5/13/11, Mordechai Cohen wrote:
Thanks for all the kind words and visits to my mom.
We're certainly happy that she has nice caring people looking in on her.
I'm glad to hear that Kayla is making steady progress, but sorry to hear that she still need help with the pain. What happened with the hypnotist?
Give my best to Beth and Steve (and Bob)
My ultra best to you, Kayla and Mike.
Have a great weekend.
Mordechai
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