Kayla Quote: "My birthday is in 8 days - I wanna cake! LOL...don't think I could eat it though..." Written by Kayla on her clipboard today
Short Synopsis: Today two doctors came to give a report on how Kayla is doing and what the overall plan is for her care. She has been in the intensive care unit for over 5 weeks.
The best part of this day - she got a passy-muir valve, a little turquoise button that is inserted into her trach which allows her to speak! She was very excited to show me that she could talk. Her voice is slightly raspy, but it was definitely her voice and she has a lot to say. Imagine being limited to writing on white pieces of paper on a clipboard for over 2 weeks. Reading lips was difficult, but I did get better at understanding what she was trying to mouth.
Anyway, the doctors listed four things that need to be addressed before Kayla could progress. The first was the speech and swallow test, called the FEEST, where they can determine where food goes when she swallows. It needs to stay out of her lungs. They use applesauce to test and Kayla said it was disgusting. She passed the initial test and would be given another one. One has to get their swallowing muscles back and it takes time. The longer you do not use these muscles that line your throat, the harder it is to get them back.
Secondly, the respiratory system needed improvement. Kayla could go 12 hours on the trach collar and from there it is no longer a two hour increment that is needed. They quickly go from 12 to 24 hours and then it is a big leap to no respiratory therapy at all. Kayla still has residual pneumonia in her lungs, but it is resolving. They have to hit her back to loosen it all up each day.
Thirdly, Infectious Diseases is watching her closely. She is still on two of the antibiotics and they are nearing the end of their course. Kayla is being monitored closely for all signs of infection and it's still a question whether she has some activity in this regard near her VAD site, where the canulars enter her body.
Fourth, her left leg needs a repair. The femoral artery was damaged during the emergency saving of her life. She sustained a left lung injury and a left leg injury where the catheter entered her body at her groin. When they connected her to the ECMO machine, the left femoral collapsed a bit. This means there is not sufficient blood flow down into her leg and there is numbness and slight cooling.
They spent the first few weeks concentrating on her heart and lungs until she was stronger and could endure another smaller surgery. They do not need to use general anesthesia. Instead they would calm her down with a dose of ativan and then use versed. They would also numb the area. She would be fully asleep but not like with general anesthesia.
Kayla has been groggy all day so I spoke with the doctor regarding the artery lesion surgery scheduled for tomorrow. He explained they would go in with a camera and take a look and then decide which way to go. According to the consent for the surgical/invasive procedure, the possibilities were - "left lower extremity angiogram, possible angioplasty, possible stent placement, possible atherectomy."
The angiogram takes a look. The angioplasty is a balloon which expands the artery wide again. The stent is placed in there if the artery threatens to collapse and this would mean one would have to take Plavix as a follow up medicine, complicating her care. The atherectomy is a scraping of the inside of the artery.
He informed me of all the things that could go wrong. He would tell Kayla in the morning before she went in. How many procedures like this do they do? Five a day and it's routine. I asked that he only emphasize the positives of this procedure when he spoke to her, as she is a very anxious person, and after all she has been through, it would be better to accentuate the positives. He agreed.
They had two units of packed blood cells ready for the surgery tomorrow. They no longer give units of whole blood. The units are called packed cells and they take out the white blood cells.
I asked to have a meeting with Psych. It would be good to go over ideas to help Kayla with her anxiety and pain. They are currently giving her duloxetin, an anti-serotonin inhibitor for depression, and lorazepam, a small dose .5 mg. every 12 hours for anxiety. They also give her cymbalta.
Mike reminded me of the hypnotism article that was in the New York Times - "Using Hypnosis to Gain More Control Over Your Illness." There are venerable hospitals who are using this method to help patients control their pain - Mount Sinai Medical Center, Beth Israel Medical Center, Stanford University, among them. I xeroxed it and gave copies to different doctors to introduce other ideas for her care. Apparently, hypnotism is very much on their idea list as well.
Long Story: This morning I went through my closet and found that beautiful skirt that my Mom and I picked out at a boutique in Piermont, a sweet town, down on the Hudson River, on the New Jersey side, which has become a little resort getaway type town. The skirt was long and full, a gray color with two more colorful bands up across the upper middle, and stitching throughout the entire garment. Very chic. I hardly ever wear it, maybe only once a year or once every two years, yet I have always admired it.
I felt it was good for my character to give this beautiful item to someone who could enjoy it a lot more than I could. To admire it in my closet is not the same as someone who could wear and truly get good use out of it. I will miss that skirt for sure as it reminds me of my mother and how we spent that afternoon together.
For some reason, I thought it would be a nice skirt for David's daughter. She is very tall, 5'10". It would be a perfect clothing item to fit in with her modest code of living. I got happy thinking she would wear and enjoy it. I put it in my luggage.
I also put in the green mosaic bracelet that I got at The Elephant's Trunk, an antique fair every weekend during the summer, up in New Milford, Connecticut. Antique dealers come early to this big field where they have wonderful deals. I bought this broken bracelet made of brass and square tiles filled with tiny glass bits of color.
Lydia here at the hospital (her husband got a heart surgery) makes jewelry so I thought she would have fun working on it. I brought it and showed it to her and she got out a special eye piece to examine it closely. Lydia wears lots of neat jewelry pieces and has fun showing me what they are and how good quality they are. She took the bracelet to see what she could do. I told her I think I was taken when I paid $75.00 for it, but I thought it was beautiful, so it didn't matter to me. My local jeweler scoffed at it when I wanted him to fix it. According to him, it was just a cheap piece from the streets of Italy.
I also put a big bag of medical bills into my car. They are presorted but need to be matched to the claim forms that come from the medical insurance company. There is a huge stack! It's going to take a lot of concentration to figure this all out. Mike helped me go through them as he has been doing the bills for years so has much experience.
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When I was rushing through the hospital to get to my 12:45 meeting with the two doctors, I was amazed to see Ernie in the waiting room, sitting on a chair, talking to someone on his cell phone. He was wearing a facial mask to keep infection out.
I gave him a big hello. He paused for a moment to let me know,
"I got a new heart and a kidney on March 22!"
He wants to come and see Kayla and has been to the other unit and waved to her from the door. He plans to come back when he can to visit her. He looked wonderful, not puffy at all, from the steroids. He was beaming.
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David says his Aunt is looking into hiring someone to come and sit for a few hours with their mother to watch over her. The three brothers have exhausted their time here at the hospital. First they all came for 2 weeks, then each brother came for about a week each. The Aunt came also. Now it is over. Los Angeles, Chicago, Atlanta and Phoenix - they are scattered. They grew up in Brooklyn and now are flung afar....
Debbie, Aaron, Mordechai, David...
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In the evening from 6-8, there was an event for Harboring Hearts Housing, a non-profit organization that is raising money for a special lodging facility for heart patients and their families to stay. It will be reasonable in cost and most likely will include hot dinners and breakfasts. They are half way through the raising of the funds to build this place.
Two young women, who met at the hospital, formed this organization. Their names are Michelle Javian and Yuki Kotani. They had heart transplant speakers, heart healthy food, a yoga expert, neatly decorated cookies which said "Harboring Hearts" and a photographer who was doing 30 second clips for the website and advertising. They also had a female singer for entertainment.
For information or for those who want to help this cause: Harboring Hearts Housing, 333 West 52nd Street, Floor 7, New York, NY 10019. Phone 516-816-3893; Fax 212-255-8371 www.harboringhearts.org or michelle.javian@harboringhearts.org
The cost for a hotel room can cost anywhere from $150 - $200.00 per night, out of reach for most heart patients and their families. This is a worthy cause with these two determined women working hard on it. They are half way to raising the money they need to set up a place.
Since I have been here over 5 weeks, I have seen first hand how many people sleep on the chairs in the waiting room, in their street clothes with a hospital blanket over them. In the morning, they splash water on their faces in the bathroom.
Kayla was very excited about this party. I kept going in and out of the hospital room to let her know what was going on. She wanted to be a part of it and was energized. She asked if they would come in and see her. After it was all over, they did. They even brought in the photographer, Chris, who was interested in interviewing her.
Kayla wanted to be filmed, but the staff said no. They said you needed a release form in order to film so they took the camera away. This was understandable and certainly correct. We had sprung it on them in the last minute. We were happy to be together and talk about heart transplants and share personal journeys.
Yuki told us the story of her Dad. He was in Japan and having serious heart problems. According to their culture, Japan does not quite believe in heart transplants. They believe that the body should be whole at death and cremated, but the thinking is beginning to change because of how successful these surgeries have become. Dr. Yoshifumi Naka, who is Japanese, and here at Columbia, met Yuki's Dad and told him to come to America, that he could have life here. He did come! He was able to get a heart transplant and has had it for 3.5 years. He is now living in Hawaii and doing well.
I told Yuki how I saw Naka one night in the big rotunda entrance very late one night. There was no one around, just Naka walking across the large room by himself. The person who I was with knew him and said a quick hello. Naka smiled and continued to walk by us toward the new part of the hospital. We noticed that the organ procurement van was in the driveway. We figured he had maybe harvested an organ and was on his way to the operating room to put it in someone. In this setting, there is tremendous respect for the surgeons and Naka is one of the world's best.
Another gal we met at the fund raiser was named Jessica Melore. She is 29-years-old. Amazingly, she got her heart transplant two days after Kayla on 6/22/99. Kayla got hers on 6/20/99. Jessica is a motivational speaker and holds down a full time job and she looks robust and healthy.
When she was 16, she had a heart attack and very shortly after that they had to amputate her leg as she had cancer in it. She now has a prosthesis. I noticed her pretty shoes that matched and were stylish. She got her new heart in 9 months and has done very well. Kayla was amazed by this inspirational gal.
Kayla thrives on people. Her face was bright and she was upbeat when these people visited her in her hospital room. Now she has new friends and she can invite them to her transplant reunion parties, which she likes to have every year.
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When David saw there was going to be a big happening in the waiting room, he was curious but then decided to leave.
"I know they don't have kosher food for you, " I lamented. Still, we asked the caterers if there was any specially prepared kosher foods for him and they said they were sorry, but no.
"There is a woman singing. I am not allowed to watch a woman singing," he said. He told our group he was leaving for a while and would be back later. He could go up to his special kosher kitchen on the sixth floor or to his new favorite place, the kosher kitchen in the Children's Hospital, a building away, where they had even more wonderful choices of food for him.
Jesus....I am a singer! All those hours I spend in my car training and keeping my voice in its best shape. I continue to train even though our concert is over. I guess the Cohen men will never see me sing. Good thing I didn't hum any bars of music when our concert was imminent. I wonder if they are allowed to listen to recorded music...what about Barbara Streisand? How could anyone miss out on hearing that voice? And she's Jewish!
Still, I am envious of their good, moral lives. I wish I had a match-making system to use for my daughter. Can one try for marriages for girls who have serious health issues?
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I hardly get home these days but when I did Mike had a nice surprise for me for Mother's Day. He had these sprigs that looked like they were from a pine tree with tiny white flowers. It was earthy and nice. He bought me a blue tooth so I could talk hands free on the highway and not crash!
His message was beautiful:
Stephanie:
Your experience of motherhood could not have been what you expected, and we both would have liked a different path for the lives of our daughters. But you have responded to these difficult circumstances in a positive way which is a quality that I respect. And I know that both Thomas and Kayla benefit every day from your love and attention. They are both great kids, and I hope that they both move ahead with their lives this year.
Mike
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