Kayla Quote: Many are sending emails, cards, texts...
Hi Steph:
Sounds like Kayla is moving along, is she eating yet? I like the sitting up and working the muscles back into form. I check your blog daily so really appreciate the updates. Keep up the good mother support work and be sure to save time and energy for play practice! That is coming up this weekend, yet?
That Talon is adorable, he must really enjoy your outings. Tarrytown is a fascinating place that when I return and look at it with adult eyes, I see so many of the same things differently. Just the view of the river is something I never really appreciated growing up that now is so amazing to me. I hope Kayla can get the view of the river from her room, face the right way!
I also really enjoyed your car driving descriptions, I too enjoy time spent in the car just chilling and thinking, solitary time for doing nothing. So, break a leg this weekend, I will be thinking of you and Kayla.
Love, Cyn (Aunt) via email 4/27/11 7:09:18 a.m.
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"Kayla has always been a joy whether it was doing girl scouts or being classmates at Scotland way back in the day. She always brought sunshine to the lives of those who know her. I unfortunately just found out yesterday about all this, but Kayla and your family are now in my prayers. Also, thank you for keeping this blog updated, as it let's me know what's happening from so far away. - Marissa, childhood friend, comment on blog, 4/16/11 8:10:40 p.m.
Short Synopsis: It's continuing care. The lungs are slow to get better. They are trying to get Kayla to use the trach collar as much as possible and their goal is 6 hours a day. They also want her to sit in the dreaded chair with a goal of 2 hours.
And no, Cynthia, she is not even close to beginning to eat again. First they have to extubate her. The lungs have to be on board. She has a feeding tube inserted in her nose and going down to her stomach. I never mention food as it must be very sad that Kayla cannot eat anything. Once she asked me what I ate but then she was silent. Now we simply don't talk about food.
One funny thing going on though...she has figured out how to talk even though she has the trach in her throat and no speech button yet. Her voice is really strange and apparently it is not dangerous for her to use her voice. The tube is smaller than her throat so this is possible. She does this type of gulping breathing as she times the words coming out. She still uses the paper and pen route mostly on the clipboard but more and more she is speaking. She doesn't give up either when she wants you to know what words she is using.
Kayla also has become a whiz with all her tubes. She knows what everything is and she fiddles with this one and that one and straightens out everything. I guess if you are stuck in a bed, this becomes your whole world. She watches TV. She is unable to focus enough for internet but she is a mad texter. Mostly, she enjoys company. I never saw anyone thrive on people as much as "the Kayla."
Long Story: It has been exhausting taking care of Kayla even though she is in the hospital. She has been in the ICU a month tomorrow and Mike and I are feeling very tired. We are good parents, hovering over our beautiful daughter and trying to assist the good doctors and nurses in her care. They are truly brilliant at New York Presbyterian.
Kayla has become a much better patient than she ever has been before. She wants to live and knows what it takes - cooperation. It also will take a tremendous amount of luck as there are very few organs available. It's a crap shoot. Those who are the sickest rise to the top of the list and if you are free of infection and don't have too many problems, you may be picked to be the one who gets the "piece of gold" - an organ that becomes available. Gone are the priveleges that Kayla had when she was only 14 and was #3 on the pediatric list and got a heart in 40 days. She is not competing with a much larger adult pool of candidates.
Mike and I love and cherish her more than we love ourselves...When we thought she was going, during the stroke that we watched in Danbury Hospital last October 20th, Mike breathed into her ear, "You were the best daughter I could have ever wanted."
As I drive out of the city and on to my final dress rehearsal practice, I see the beautiful sunny day. I am about to pass my daughter's window. It is up on the right, five floors above the ground, a small window that peeks out to our river. I will do some mental measurements to see if they can turn the bed and the cumbersome machinery that is her PVAD electrical supply and engine so she can watch the river, the bridge and all of its machinations.
I am hungry and have forgotton to eat. I need something before the practice but have no time to buy anything. On my left is a cart with two people selling flowers and plastic packages of fresh fruit. Ok, I will take my chances. I beckon to them while the light is still red.
They are New Yorkers and look at me with suspicion but then clearly they find me an acceptable customer. They say $3.00 for one and try to sell me 2 for $5.00. I only need one. As I drive up, I open it up and it was absolutely delicious and very cold, right out of a refrigerator. It was full of all kinds of fresh fruit, including mango, pinneaple, strawberry and green melon. It is chock full too. I can tell you this...I will be a regular customer of theirs as long I am am forgetting to eat!
They had politely given me a napkin and a fork, but I am too ravenous....I eat with my fingers and clean them off later.....
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