Short Synopsis: Kayla was surprisingly perky today. It was due to the fact that her dear friend, Janelle, the one who has had her heart transplant for nearly 23 years, was downstairs in the catherization lab, getting a heart biopsy.
Kayla had a great session of physical therapy with her therapist named David. She did laps around the hospital hallway. Sometimes the therapist would stop Kayla and check her oxygen level by putting a white pulsator clip on her finger to see if it registered 100%. Kayla gets winded but things are progressing. At the bedside, they turned down her oxygen from 100% to 40%. This is piped in through her trach to help her lungs.
Two young pain specialists came to analyze her pain medications. They liked what was being done and they felt the management was correct. Kayla wants extra medicines in case of extreme pain and they told her no. She got irritated with me when I asked about alternative therapies. The specialists then became arrogant and said all of those therapies are "not evidence-based." They informed me that there is no department in the hospital which deals with this. This I know first hand - when you call a phone number that was given to us, no one answers.
It is obvious to me that they don't have a clue what kinds of pain patients go through. There they are standing, younthful, exuberant, physically top notch and in no pain! No open minds either! Closed off, yet so young!!
I told them that top hospitals are now coming on board with new departments trying to find new solutions to pain. Did they see all the latest articles out in the press? No, they did not. I told them venerable institutions like Stanford and Sloane Kettering and Hartford Hospital are all considering new thinking in these areas. I guess I have to xerox articles for them to read.
All they do is pooh-pooh.
I would like them to sit in Kayla's body for just one day when she has extreme pain! Just one hour of extreme pain!
Then I could stuff the arrogance right back down their stupid throats!
Long Story: Today would have been my sister Marcy's 48th birthday. She died at the age of 24. She has been gone as long as she was alive. We never forget her, ever. She is the first one to die in our family, the fifth born, and we all were devastated, but time marches on and the earth is for the living. For me now, it is for what I can accomplish here before it is my turn to go. I would like to increase organ donation awareness and help increase the number of donor hearts for the 3-4,000 patients across the United States at this very minute who need a heart to survive.
Kayla needs a heart as soon as possible - so do others. If I could save a bunch of lives, I would feel I have done something great for the world. I know it keeps getting better and better how these transplants work.
I arrive at the hospital to see Bob at the front entrance. He gives me a big hug and tells me that Beth and Steve's mom has a blood clot in her heart, which she got at 3 a.m.
"She looks bad," he says.
I know this pioneer 80-year-old woman is a gift to this earth. She has allowed them to use her as a guinea pig all along for hearts and she is a survivor. I watch her in amazement. I think she will be with us for more time. I feel it. I hope.
Chalkboard messages:
Steph:
"Fink? Me? Sorry was so tired. Still am - Hope all is well! Love to you and Kayla. Bob is here."
Beth
Beth:
Bob told me. Prayers for you and your Mom.
Love you,
Stephanie
5/24 11 a.m.
Steph:
Thanks.
Beth
Beth:
Kayls is doing great. I love you Beth."
Steph
5/24 3:30 p.m.
Ross and Walter pop by to meet Kayla. Walter was here for a check-up on his valve surgery. He is a flight technician and has to take a couple of months off. He cannot lift any weights as he gains strength. His chest was totally opened for the surgery so it takes time to heal.
As we walk to Kayla's room, Walter says,
"I have been feeling a lot stronger this week."
"Oh, like a break through..."
"Yes," he answers.
Ross stays for only a few minutes. It is obvious he has much on his mind. He is on his way to San Diego to rent his apartment there and come back to live here in New York. He has a lot of details to tend to but let's us know he will be back in a few days.
I want to go and see the baby hawk with him! He clearly likes to walk and walk for blocks - my kind of person! The hawk lives near his home down on the bottom of the island.
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Email to my many friends from high school and beyond:
Sent: May 23, 2011 8:11 a.m.
From: Stephanie
Re: My daughter Kayla's journey
Hello All:
My daughter Kayla had a cardiac arrest April 1. Amazingly, Columbia Hospital in NYC save her - 5 surgeries later she is still alive and progressing forward. She has a special mechanical device which keeps her heart going as she waits for a second heart transplant. Her transplanted heart, which lasted nearly 12 years, will no longer support her body in any way.
I started a blog about 4 weeks ago and it's beginning to be read around the world. I do a post every day - this is natural for me, as I am an author and also natural for me, because more importantly, I am a mother trying to save her child.
A current story, it unfolds every day. There are many subplots alongside my daughter's main story. The internet is incredible - the blog has gotten over 3,500 hits in a month's time with no promotion. Now I am letting everyone know it is out there. It's a local story with lots of Tarrytown, N.Y in it and lots of Ridgefield, Conn. as well.
Please become "followers" to help the cause of organ donation as I go out and seek support from all kinds of places. You can save lives and help my daughter get a heart, the hardest part of her journey. If you could pass this email along to your friends, I would appreciate it.
Thank you.
http://stephanieeasyspeaks.blogspot.com
114,000 people across the United States are waiting for organs. Nearly 90,000 are waiting for kidneys but over 3,000 are waiting for hearts. One organ donor can save 8 lives. Kayla, who is now 26, is on an adult candidate list with over 200 people waiting for hearts. The wait time for her is 1 to 1.5 years. She may not make it in time to get her new heart. Please consider organ donation. Thank you.
Monday, May 23, 2011 11:27:48 a.m.
Stephanie - Thank you for this update, and know that I think of you and Kayla much more than you know. I will definitely follow your journeys on your blog. My best to you and Kayla -
L, Lydia (Sampson)
Monday, May 23, 2011 10:17:09 p.m.
Stephanie: Every since you mentioned Kayla's failing heart to me last fall, I have been thinking of her and your family, praying for strength until the right solution can be found. Sounds like you are on a path, albeit a painful and trying one. Thank you for the blog; I backed it up and started at the beginning because I was trying to discover, how did this happen? Now I understand that it was only a matter of time. God clearly has Kayla in the palm of His hand...otherwise she wouldn't have been in the operating room in a renowned hospital with fantastic doctors. And not as casual but ready to put their knowledge and skills to work.
I'm on April 15th and look forward to picking up tomorrow the continuing saga of The Kayla. I will definitely forward your blog site to friends, and encourage them to remember there is no more life affirming action than participating in organ donation.
You, your family, and of course, Kayla, will be in my heart daily. Keep up your strength, my friend, and that smile on your face.
Love, Katie (Harriss)
Monday, May 23, 2011 10:31:21 p.m.
Stephanie, my heart and prayers go out to you, Kayla and all your family. There is a wonderful heart coming her way soon and she will survive to bring joy and love to many others. God Bless you all, Rich (Palermo)
Email to my many friends from high school and beyond:
Sent: May 23, 2011 8:11 a.m.
From: Stephanie
Re: My daughter Kayla's journey
Hello All:
My daughter Kayla had a cardiac arrest April 1. Amazingly, Columbia Hospital in NYC save her - 5 surgeries later she is still alive and progressing forward. She has a special mechanical device which keeps her heart going as she waits for a second heart transplant. Her transplanted heart, which lasted nearly 12 years, will no longer support her body in any way.
I started a blog about 4 weeks ago and it's beginning to be read around the world. I do a post every day - this is natural for me, as I am an author and also natural for me, because more importantly, I am a mother trying to save her child.
A current story, it unfolds every day. There are many subplots alongside my daughter's main story. The internet is incredible - the blog has gotten over 3,500 hits in a month's time with no promotion. Now I am letting everyone know it is out there. It's a local story with lots of Tarrytown, N.Y in it and lots of Ridgefield, Conn. as well.
Please become "followers" to help the cause of organ donation as I go out and seek support from all kinds of places. You can save lives and help my daughter get a heart, the hardest part of her journey. If you could pass this email along to your friends, I would appreciate it.
Thank you.
Stephanie
http://stephanieeasyspeaks.blogspot.com
114,000 people across the United States are waiting for organs. Nearly 90,000 are waiting for kidneys but over 3,000 are waiting for hearts. One organ donor can save 8 lives. Kayla, who is now 26, is on an adult candidate list with over 200 people waiting for hearts. The wait time for her is 1 to 1.5 years. She may not make it in time to get her new heart. Please consider organ donation. Thank you.
Monday, May 23, 2011 11:27:48 a.m.
Stephanie - Thank you for this update, and know that I think of you and Kayla much more than you know. I will definitely follow your journeys on your blog. My best to you and Kayla -
L, Lydia (Sampson)
Monday, May 23, 2011 10:17:09 p.m.
Stephanie: Every since you mentioned Kayla's failing heart to me last fall, I have been thinking of her and your family, praying for strength until the right solution can be found. Sounds like you are on a path, albeit a painful and trying one. Thank you for the blog; I backed it up and started at the beginning because I was trying to discover, how did this happen? Now I understand that it was only a matter of time. God clearly has Kayla in the palm of His hand...otherwise she wouldn't have been in the operating room in a renowned hospital with fantastic doctors. And not as casual but ready to put their knowledge and skills to work.
I'm on April 15th and look forward to picking up tomorrow the continuing saga of The Kayla. I will definitely forward your blog site to friends, and encourage them to remember there is no more life affirming action than participating in organ donation.
You, your family, and of course, Kayla, will be in my heart daily. Keep up your strength, my friend, and that smile on your face.
Love, Katie (Harriss)
Monday, May 23, 2011 10:31:21 p.m.
Stephanie, my heart and prayers go out to you, Kayla and all your family. There is a wonderful heart coming her way soon and she will survive to bring joy and love to many others. God Bless you all, Rich (Palermo)
Tuesday, May 24, 2011 9:56:08 p.m.
Stephanie, Will save this message. Read the blog. Meadow Hooray for Arlene. Some of us are great to start with and actually get better over time. Will pray and keep my ears open for donors. Richard's niece used to work with transplants as a nurse. Will forward.
Sheila (Brady)
Thursday, May 26, 2011 7:45:30 p.m.
Hi Steph: Kayla's struggle really puts things in perspective. She is really an inspiration to me. While I'm pretty religious, I can't figure how God let's a young girl go through such agony. But she will perservere. My prayers are with her.
Jimmy (Sabo)
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Stephanie, Will save this message. Read the blog. Meadow Hooray for Arlene. Some of us are great to start with and actually get better over time. Will pray and keep my ears open for donors. Richard's niece used to work with transplants as a nurse. Will forward.
Sheila (Brady)
Thursday, May 26, 2011 7:45:30 p.m.
Hi Steph: Kayla's struggle really puts things in perspective. She is really an inspiration to me. While I'm pretty religious, I can't figure how God let's a young girl go through such agony. But she will perservere. My prayers are with her.
Jimmy (Sabo)
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Text to Kayla: Where is Pip?
Text back: "I don't know!"
"A wave of panic swept through the chat room as speculation swirled that Pip had tumbled from the 12th floor lefge upon which the nest sits. We were inundated with e-mails with the subject line "Where's Pip?"
We switched cameras to one with a higher, wider angle. Sure enough, there was Pip, on the ledge to the left of the nest peering up at Mom. Reader Jeff Folmsbee captured the great video (one minute) of Pip flapping his or her wings a bunch of times, then deciding to cut short the mornings's adventure and climb back up to the nest." - New York Times - Andy Newman and Emily S. Rueb 5/24/11
Reader's Comments:
Riley, NYC 5/24/11 12:49 p.m.
I can hardly believe that this is true, but it is unless my eyes failed me. I saw Pops actually deliver 2 strong beak blows to one of the unhatched eggs. The result was a large hole in the egg. Did anyone else see it?
Michael, White Plains, 5/24/11 6:44 p.m.
This is continuously entertaining. I just watched Violet and Pip dispatch an entire pigeon. Or what looked like it might have at one time been a pigeon. Took them about ten minutes....have watched them having many a meal, with Violet tearing off every-growing chunks to feed Pip.
Thanks so much for the web cam. Our family is totally hooked!! And Andy - thanks for getting the angle changed on the camera today so that we could all see Pip's first walk! Thanks to you - we have learned so much - and gained appreciation for this beautiful family and all birds in general.
Binnebrook, New Paltz 5/24/11 5:36 p.m.
(After eating the pigeon) Now Pip is face down in the nest, sleeping it off. Reminds me of that old Alka-Seltzer commercial: "I can't believe I ate the whole thing..." -- You ate it Ralph!"
I actually saw when Bobby brought home the bird that was consumed. It was very worrisome that he hadn't appeared for days and someone posted that they read on some other blog that he died from a poisoned rat. When I finally saw both Bobby and Violet with Pip, I sighed a huge relief. I confess, I will be heartbroken when Pip fledges and all leave the nest. I have thoroughly enjoyed our community of "watchers!"
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Janelle has got to be one of the most beautiful souls I have ever met. She and Kayla have the most blessed friendship, born out of understanding how the other feels with a transplanted heart. They are a few months apart in age and very different in personality.
Janell's biopsy went very well downstairs. One of her coronaries is 50% blocked but the good news is that it has not changed since January. GREAT!
When I go down to visit on the 2nd floor where the catheter lab is, Janelle is sitting up in Bed 8, eating a sandwich. She wants to get to Kayla as bad as Kayla wants to get to her!
This recovery center is the fantastic - the whole cath lab is. It's all part of the new building which was completed one year ago, called the Vivian and Seymour Heart Center. State-of-the-art, it's one of the best heart centers in the world.
The two buildings lead into one another. You know you are in the new one as the floor color changes from tan to light white beige. All is polished to a shiny spiffiness and glitters. This is where Milstein Building ends and the Heart Center begins. I like how they connect buildings together in New York City.
Kayla is too tired to go down but Janelle comes up...
Kayla is too tired to go down but Janelle comes up...
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