"Hi, my name is Stefanie and I became friends with Kayla through my fiance, Casey McKee. They went to school together. You and I were introduced once when I came to your house to hang out with Kayla. Kayla really is the nicest person I have ever met...I don't think she has a mean bone in her body. Casey and I would really like to send flowers but I don't know where to send them. Could I have an address or a place to send them to? Also, please don't tell Kayla, I would like for it to be a surprise! Thank you!" Stef & Casey, Facebook message to me, 5/23
Stef crocheted the most beautiful hot pink scarf and sent it from Florida. How did she know Kayla loves pink!? Kayla will look stylish in the winter with that scarf!
When I saw Mike this morning after his visit with her last night, he informed me that she was finally out of pain. They had given her a final dosing of dilaudid. When I saw her the day before, she had already gotten methadone, oxycodone, intravenous dilaudid and then more dilaudid.
"She was high, but she was out of pain." Mike tells me.
The nurse practitioner was rushing too much and accidentally yanked Kayla's line leading into her chest. This is what initially caused her pain and it was downhill from there.
We can all stand around "the Kayla" and say how she should bear the pain and use fewer narcotics. I dare anyone to be in her shoes and believe that!
We are constantly searching for other methods to reduce her pain - alternative methods like hypnotism and MBSR - Mindfulness-Based Stress Reduction, Massages, Reiki, Yoga, something! There is a big pain renaissance and Time Magazine had a cover story on the pain management subject earlier this year - over 20 pages of reporting! In the coming years, great strides will be made to help patients with pain. Kayla is not the only one with insistent, chronic pain.
Long Story: Today was the start of the learning process - we caretakers have to learn how to handle dressing changes at the tube sites and also how to handle the ventricular device. Kayla may be going home. Everyone is working on a plan for discharge. There were tough moments with all of this so I cried. Kayla cried too.
When I arrived in the morning, Kayla could not tell me what the lung doctor had said. She is a late sleeper so morning time is not her best time. The doctor probably spoke with her, not even realizing that she was awake with eyes open, but asleep with her brain. No matter!
We began the device training but it was overwhelming. I was too tired to be of any use. Two months of a constant vigil is now beginning to take its toll on me. Yesterday's hard day made for a wasted day today. I sometimes have trouble replenishing. After learning the basics, I said "No more today. Tomorrow we can begin again."
My absolute-gem-of-a-mother shows up when days are bad. Today she came from noon to 4 p.m. Her advice was to get a lawyer and keep Kayla in the hospital until she gets a heart. This was in response to my saying that I was a one-person-show and was not a 24-hour-nurse.
Here at the hospital there are teams of experts, all in different fields - cardiology, infectious diseases, psychiatry, sociology, transplant cardiology, surgery, nursing, pain specialists, labs, x-ray technicians, scan technicians, housekeeping, nurse's aides, dieticians, etc... You get the picture!? "The Kayla" is taken care of by scores of people, teams of specialists.
Certain things have to be in place or I cannot take Kayla home safely. We will be given the Thoratec PVAD heart pumping machine which keeps her blood flowing properly through her body. We will also be given a back-up machine. Also, two blue bulbs in case both machines fail and we have to hand pump her blood with a bulb in each hand (looks like a turkey baster) - one and two, one and two, at the mimic heart rate of 80 per minute. We also will be given 6-8 batteries for power, when it is not plugged in and she is moving about. Also included will be a battery recharger machine.
Kayla wants to go home so badly. She wants to see her cats and sleep in her own bed. She is tired of the hospital. It's been almost 2 months now!
Overall, she is doing really well...
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Kayla is sitting in her bed and feeling much better today. Her cheeks are rosy. I like that.
Mom is ready to tell stories - I like that too!
Somehow we get on the topic of me in high school and race riots. Did I remember the race riots in school?
Of course not.
Only thing I remember is how much tension there was and how I could no longer talk to Regina Miller, even though we were very good friends with her mother, Blanche. I remember seeing long, lithe Regina walking the halls in anger with a huge afro on the top of her head, her black eyes boring into me. She was intimidating. We would pass by each other and stay as far away as possible from one another. I was absolutely scared of her.
When I was young, Ike Blanchard, Sr. used to come to our house at 182 Crest Drive and do just about anything as our handyman. Josephine, his wife, did cleaning, twice a week. We loved our Josephine. I was happy as a little clam when they came. Ike did painting a lot and he always included me in all of his projects. I was 10 and he was painting my parent's room. I was allowed to participate and I got lots of paint in my hair because I leaned over and pressed against the wet paint on the wall. Patient Ike, laughing, wiped it all out with turpentine. There really wasn't any water-based paint in the 1960s. I would do anything to get those minutes back, me and Ike, painting.
Mom says that there was a bad race riot and the agitated Ike came to our house, saying,
"Jacy, they are rioting down at the school. Our kids are not safe!" Everyone was nervous but Ike told Jacy,
"Don't worry. I'll go and get them all. I'll do it." Down he went in his car to retrieve us. Mom says he came back with Mom's kids and his kids. Now I am just guessing but I think it would have been me and Cynthia, the white ones and Rene and Doreen, the black ones. Geez...at least Regina was not in the car!
We were safe.
"I have absolutely no recollection at all Mom, not even a bit." I tell her.
"You were all annoyed because you were having fun watching it all," she tells me.
Mom continues. When Ike was a child it was the depression and no one had anything - now she is spinning back to the 1930s. Ike used to deliver newspapers to people in town and one of his customers was the Warners. Now they had a lot of money - the library is named after them and a street is too. Ike was their delivery boy for their newspaper. So one holiday, they gave him a really incredible tip - a $10.00 bill. This was a king's ransom. Ike was thrilled and he began to tell everyone along the way home that he had this amazing bill. By the time he got home, his father had already heard the news. As he stepped inside the front door to his home, his dad said,
"Hand that bill over to me, son."
Ike laughs when he tells this story. He wistfully thinks of what he could have had with that bill.
Kayla says, "That's not fair. That was his money."
"But it was the depression I tell her. No one had any money for food. I am sure that father used that money for food for the family."
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I wonder whatever happened to Rene Blanchard. She was my peer and a lovely gal, very quiet, a good person. Last time I heard anything about her, she was married to a serviceman and in Germany but that was many, many years ago.
Nancy Blanchard was Josephine's identical twin sister. She died a bunch of years ago. Is Ike Senior still alive, I ask Mom? I think so. I could call Josephine and get a run down on where everyone is. She still lives down by the river there, not in Franklin Courts, but in a place nearby...
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I have not seen the foxes in weeks. Alice tells me that Mama fox had one pup that kept following her when she went out on her nightly hunts. Mama fox would leave the pups in the den and go to find food but this little one insisted on going with her. It did not come back.
"A goner," laments Alice.
The last I saw of them, there were only two left out of the original four pups...
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I am tired and there is a lot of sad weight on my heart. My Kayla is suffering but she keeps on surviving. God is tough on her and I cannot save her. I can only give her love, the special things she likes and hope that a new heart comes.
The new heart pump is a great bridge to transplantation as organs are very hard to get.
We will go home soon and sit and wait...
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