Kayla Quote: "I can't remember my password." Kayla lamenting about how she has forgotten her password for Facebook
Short Synopsis: Today was another amazing day, truly! They took out Kayla's feeding tube and it left a bump on her nose. Am glad she does not have a mirror because that would have bothered her. It will take a few weeks for the indent to disappear. When you begin to eat again, it's small bites and then more small bits a few hours later. She has to eat more and she's is game. She can walk to the end of her unit and back with her new device luggage device with handle pulled alongside. It's the vital engine that drives the motor that pushes the blood through her body.
In the afternoon, she has trouble breathing so they are troubleshooting and thinking about how to address this. She has tremendous pain at her VAD site where the four large one inch tubes lead into her body just above her stomach. There is frequent changings of this dressing to keep the area clean. When they give her pain medication, she takes a nap and escapes the pain.
The hardest part of the day was when Kayla cried. Kayla is not a cryer. She never has been one to cry so when she does, it's serious. Big tears were dropping down her cheeks. Today was the first day she learned that she has to have this luggage console. She thought she would have a device that she could strap to her midldle and walk around with, not a big piece to lug.
Mike and I knew she needed the bigger device and I told her it was because she had suffered damage to both her right and left ventricles of her heart, not just her left side. Her cardiac arrest was much more serious - at least she had life. She was miserable because she wants to be able to go and see her friends in different places at any time. She wanted to wear big loose clothing to hide the device so she could lead a somewhat normal life.
"I will drive you anywhere you want to go! We will figure it out," I told her. What we need now is a new heart. That will get her the freedom she is seeking...
Long Story: When I woke up off the couch in Tarrytown and looked out the window, there was a river of water flowing down Cobb Lane, a big brown stream. Dad was standing next to me.
"The Saw Mill Parkway is going to be closed. If there is that river is flowing down Cobb Lane, it is definitely going to be closed!" Dad agreed with that!
Blue loves to come and sleep with me on the couch at night but he nevers stays for long. He goes through this elaborate routine of rubbing your face, breathing and purring into your nostrils and nipping your hands as you pet him. He then flops his warm furry body into your side. He loves to be stroked but then as fast as he settles in, he gets up and is gone.
In the morning, he has another routine of jumping up on the back of the couch and looking out the window down at the back yard. The Hudson River is in the far distance but he is looking at the squirrels and chipmunks and reacting with a flitting tail. I now sleep in the other corner of the couch ever since I came in the other night and Ty and Deirdre had taken up the other two spots. I like the new area - I like change.
Today is special in one more way. My dearest childhood friend, Bumpy, is now in the area. She has driven all the way from Austin, Texas to come back to the Northeast for a month. She will be visiting many in her family and her sister, Anne, has flown in from Kenya, her home for the last 30 years. This morning Bumpy will be coming over the Hudson River, across the Tappan Zee Bridge, from Robert her brother's home in Ridgewood, New Jersey. We will then drive down to the hospital together.
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Mordechai and Dovid:
I have visited your Mom over the last two days. She looks very sweet with the new hairstyle - they washed her hair and put it in a side ponytail that is curly. She looks better to me. Her hands are less swollen than before. She responds when I speak about her sons -- I am not kidding! But she does not open her eyes.
All her numbers look good. She is off the vent for 2 days now. Only strange thing is her heart rate went from the 70s down to 54 - ask about that? Also, ask that she get physical therapy so she does not just lay there. :) She also responds when I touch her feet - I tell her that she is ticklish. I always rub her arms, face and hair. I believe the touch is important. This last time Maria from the reception desk went in to see her with me.
You can read all about Kayla in the blog. She is doing great - really great! We are now up on the 7th floor where she has an incredible view of the river and bridge. She is walking and eating.
I am no longer lonely - my best girlfriend flew in from Austin and will spend a week or so with me. My sister Deirdre turns 40 tomorrow and Kayla turns 26 on Thursday - so we have fun birthdays coming. My sister Valerie is having a special dinner on Saturday for Deirdre.
Hope all is well with both of your families. I want to see a picture of your daughter in the beautiful skirt and if she gets bored with that skirt, let Mordechai's daughter enjoy it!
Regards,
Stephanie
From: Sarah
Sent: Tue, May 17, 2011 10:56:35 AM
Subject: Gunther, Ann and Sarah
Hi Stephanie,
I am sorry, it got a little crazy yesterday with mom's transfer to Burke.
At first they weren't sure if it was a go or not and then all of a sudden it was and the ambulance was there. I was going to ride in the ambulance with her so I didn't get to say goodbye. I am going to miss our gang and so appreciate all the support and understanding and kindness, as well as the inside scoop on the hospital goings on. I hope that all goes well with Kayla. My sister and I are followers on your blog now, so we'll be able to see how she is doing. Please say goodbye to Beth. I don't have her email and tell her I am pulling for her mother. I also am sending you both hugs and hope we can stay in touch. My dad sends his regards as well.
Love,
Sarah
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At the hospital, Kayla apparently took matters into her own hands and began to walk out in the hallway with her physical therapist as she scooped her new surroundings to find a room to move in to. She saw a dirty single that was empty and asked about it. Someone else got that one first but when a new one was available they would be sure to give it to her! Kayla takes care of herself!
Mike came to visit "the muffin" in the evening. When she gets a good nap, Kayla gets wonderful time in the evening, her best biological time of the day...nightowl that she is. She and Mike enjoy playing cards or games like UNO. It's special bonding time for the two of them. This evening Mike was excited to tell me by phone that Kayla is officially back on Facebook!
In less than 20 minutes, Kayla got 40 responses from her post...
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