Kayla Quote: "I had trouble breathing.
My heart was tight.
Everyone was yelling.
Then there were 10-12 doctors and nurses surrounding me.
I passed out for ten seconds."
- Kayla describing what happened to her when the VAD battery died in the hallway on their way back from a scan test.
Short Synopsis: Kayla was scheduled to have a scan of her chest at 1 p.m. to see how her lungs were doing. She is still healing from the residuals of the pneumonia. It takes a long time to clear it out of ones lungs. The doctors also like to see what is going on with the canular placements into her body.
They took her down for the test and were on their way back up the patient elevator. Kayla was excited as they said she could now eat. I was dispatched to the street to fetch some of her favorite foods. She ordered plain spaghetti with all things on the side - tomato sauce, parmesan cheese and butter from Famiglias on Broadway. Just at the corner of Broadway and 168th Street, I was also to get a strawberry banana smoothie from Starbucks. They use an entire banana in each smoothie, a hard thing to find these days.
Kayla has this habit of texting me all along the way - my every move is on her radar. Tethered to a hospital room, she uses me like her moving robot to do all her bidding. I get a big kick out of it but it can also be irritating. Today was special though...she was going to eat for the first time in 44 days. How many people can say they haven't tasted food in 44 days?
Her texts stopped and I thought it was out of character. When I got back they wouldn't let me into her room when I called for permission to go in. The banana smoothie was melting in my hands, the spaghetti growing cold. I texted her...nothing. I sat down wondering what was going on but many times they do procedures so it is not alarming.
Her nurse Kim came out. Kim is one of my favorite nurses - very professional, on top of her game. She met me at the desk to tell me what happened...
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Kayla was being wheeled around the corner, not far from her unit room, with 4-5 personnel in tow. It takes one person to push the big VAD machine - it's bulky. It takes another to watch the cables that lead from it to the patient's body. It takes another to push the head of the bed. It takes the main nurse to read the vitals and watch Kayla. The entire group moves slowly and carefully through the hospital.
As they rounded the bend on the 5th floor Hudson North, the machine sent out a quick series of warning alarms and went dead. Within moments, Kayla slumped down and fainted away. Linda Black and her son, Eric, were nearby. They ran to the nearest nurse's station and pressed for help. It may be a "code." It's down that way.
Within moments, many doctors and nurses were by her side. They tried to plug in the cord but nothing was happening. Kaylas' blood pressure plummets. Kim followed the emergency protocol and took off the small hand-sized royal blue bulb, like a turkey baster without the tube. The machines cables were disconnected and the bulb was inserted into Kayla's tubes. Another nurse was pumping air into Kayla's lungs. Some of the others, who had been pulled off the floor fell off - it was only a VAD failure, not a true code.
Kim knew Kayla's normal heart rate, anywhere between 110-120, high by normal standards, but normal for Kayla's weakened transplanted heart. She manually pressed the bulb to keep Kayla's blood flowing through the ventricular assist device, keeping it up for at least 4 minutes. Someone else was running to get another VAD machine to hook up.
When they got her back to her ICU room, there were many teams making sure she was alright. They changed out the VAD machine and sent it to maintenance. They made sure the new one was working properly and they had a new back-up machine nearby. There is always a back up a few feet away.
Apparently, the machine needs 24 hours to fully charge. When they went to surgery the day before, they had to unplug it. Then there was the scan, so it was not fully charged. It should have worked when plugged in and failed there also.
The current heart in Kayla's body cannot support her in any way and this incident proved it. This nicknamed donor "big heart" from a young 18-year-old Marine, killed by a drunk driver, is truly at its end. It is a blessing that it has given Kayla nearly 12 additional years of life. She went to two proms: she graduated from high school with her peers: she went to over three years of college: she's worked in jewelry sales and as a nanny: she's thrived in a sorority: she's loved by family and friends - how can we not feel blessed in the middle of this hard life that she was dealt? Kayla loves life more than anyone I know - and in her own words - "This life is not a guarantee - it's a privilege."
Long Story: David was miffed by the nudgy Rabbi who kept coming by to speak with him. The Rabbi was trying to be helpful but had an irritating personality. Each time we saw him come to our cozy corner, we tried to figure out ways to get rid of him. He was not comforting, but judgmental.
How did this mother raise three rabbi sons like David and his brothers? This insulted David. Was he insinuating that his mother was not religious? What does he know? He does not even know this family. I tried to joke about it. Maybe it's because your Mom is not wearing a wig in the ICU, but David is not in a joking mood.
The rabbi looks like a hawkish turtle standing just outside our corner. When he speaks, no one wants to hear what he says. He is just looking for gossip to turn things against you. I say nothing to him anymore - all respect is gone.
David leaves without saying goodbye. He does not accept my offer of a ride to the airport. I have searched all over for a parking spot and it's been impossible. I do not want to park in the garage in case David needs a ride but he says I need to be with my daughter. What he doesn't know is that I need to move in order to keep my sanity.
I am parked all the way up on Broadway at 173rd Street. I see that it is one hour parking but I think I have plenty of time to move it. I walk down and buy cheap roses to spruce up our corner. It is my home now after all these weeks. I write in my corner, in the company of two other writers. What are the chances of three writers being put together like this? Steve is a medical correspondent for USA Today. David has just completed a book of teachings for his students and spent time editing it on his computer. I am blogging Kayla's story. Steve and I spend lots of time, each in our chairs, with pens in our left hands, jotting notes for our stories.
Steve will write his later and his will have much more research in it than mine. Mine is more folksy - more detailing of all the simple folks around me, the animals, the hawks, the cats, the foxes. As I write this minute from my couch in Tarrytown, Blue is nestled into my side, watching me. He is my middle of the night buddy, expecting pets and full attention from me, waking me for it. And I comply. He continues to be shut out of the other bedrooms. I am used to three cats at home doing this so one cat is a breeze!
On the street, I buy some new clothes in a Spanish shop. The sun is out and everyone is happy buying new spring outfits. I need new pants as all of mine are falling down. The stress makes me lose weight no matter how much I eat. The close out store has great prices and the Spanish that is spoken here is melodic. The hawkers are all over the street telling me how great their products are. I buy Kayla some hair bows because she is now totally interested in taking care of herself again. She wants to wash with wash wipes and she wants her hair clean and combed.
When I go back in one hour, there is already a ticket on my car. This is the forth ticket I have gotten here. They do not let your car go one minute over! One ticket for $60.00; one for $45.00 and two for $35.00. I think I am clever finding free parking all over the neighborhood but I am losing at my own game of keeping parking low cost. Daryl got a ticket for over $100 for parking in some no standing zone. No one messes with parking near fire hydrants - NO ONE! The rest of the time, people make spaces where they can, even with the risk of getting a ticket. For the $45.00 ticket, I inserted a note saying how I had no job, was desperate for parking, my daughter was in the ICU waiting for a heart and what the hell do you do in this situation? They have not cashed that check! For the others, I have sent in the money, no complaining.
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Everyone is wondering what happened to David. There is a discussion and no one knows why he just disappeared. Maybe something was wrong. Maybe he finds it hard to say goodbye. We just sit and wonder. It won't be the same without him. Beth, Bob and I are now just about the only ones left from the gang. New members Gunther, Sarah and Anne - their mom will go to rehab very soon. People do have to go back to their normal lives. Money has to be earned to keep the bills paid. We are missing David's amazing life stories. We are missing his teachings...
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Violet will be left alone! They had a big meeting, a press conference too! Violet is doing all she is supposed to be doing as a hawk mother. She is "rousing" so she is not uncomfortable, even with the leg problem. Rousing is when she stretches her wings and settles down on her nest over her baby and shows signs she is not in pain.
There is an local expert named Bruce Yolton who writes about the local hawks on urbanhawkblog. I have not had a chance to read it but will as I gather notes regarding the city red-tailed hawks.
They took an informal census of all the local red-tails. There are 8 active nest in Manhattan with about 100 total adults living here (could be 50% higher). There are 10 nests in Queens; 4 in Brooklyn; 6 in the Bronx and 7 in Staten Island. This brings the total to 35 active nests in the New York City area - that means there are 70 adults birds parenting fledgings. Nature is not kind. There are many nest failures and deaths of nestlings. Probably only 20-30 successful nestlings make it each year.
The reason they are leaving Violet alone is because her baby is very strong and could very likely be one of those few successful fledgings who will make it to hawk adulthood! As long as her life is not immediately imperiled, they will leave her alone to raise this baby. The egress baby only needs 5 weeks to grow up and fly out. After that they will make a new decision of whether to capture her to treat the leg. If her leg gets really bad, they will interfere earlier.
Wowzers!
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The lurking Jewish rabbi comes by again and finds out David is gone. He turns to Beth and knows finds out she is Jewish but she is irritated by him. He questions whether she is really Jewish.
"Is your mother Jewish? She is not on my list," he tells her, "Are you Jewish?"
"Of course I am Jewish. I came from my mother and my mother is Jewish!"
"Do you want me to go and see her?"
"No! You'll scare her to death!" insists Beth.
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I call Michael and cry about the VAD failure. Weep, weep, more weeping. He says he will be there tonight at 6.
Kayla had wanted her special food at 2 p.m.
They finally let me in at 3:30...
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