Kayla Quote: "May no worry stay too long."
Short Synopsis: Kayla is very excited about going home. A lot of planning is being done to see if she can be discharged to go home to wait for a heart.
Long Story: Oh wow! It's the last day of May. I arrive at the hospital at 7:30 a.m. and get a bowl of oatmeal. It's the "best in the world," I tell anyone who is in the area. It's slightly gummy and absolutely delicious. I try to make it this way at home and fail miserably. It's just not the same. I put all the delicious stuff in it...raisins, brown sugar, cinnamon, stuff. I close the lids (one for Kayla too!) and go upstairs.
I beat out the Jewish man who has tried to take over my hidden corner. Of course he has every right to be there too but it's a contest to see who gets the space first. I do competitions everywhere...even beating out people for the coveted gorgeous view of the Hudson River corner. I notice he smelled bad. Was it his teeth? He has a big white beard which he wears like a bib for catching food. No, I am not prejudiced. He could be any religion. He just doesn't keep clean.
I hear a sad short story of a 30-year-old person who was hit by a car. I wonder about donor families. They are generous families and we need one or Kayla will not live.
I search for the chalk board to see if there is any news from my hospital families and there is!
------------------------------------------
Steph: Yes, leaving tomorrow for a few days. My mom is has been moved to Garden South, Room 340. How's Kayla?
Debbie
Steph: Hi--paid a quick visit. xox Steve
Debbie:
I will watch over your sister.
Steph
Steve:
Howdy stranger! Kayla is going home soon to wait for a heart!
Steph:
Great news! xoxo
Beth
------------------------------------------
I go to see Mom Cohen at 4:30 p.m. but she is not in her new room. They have taken her out for dialysis. Will have to go and see her later before I leave.
I bring Kayla the delicious oatmeal. It is definitely comfort food and we always enjoy it together. I am shocked when I see the bottom of her feet. They are completely black and swolen but she doesn't seem to care. She is only full of excitement for the idea of going home. The blackness came from walking all over the hospital with the therapist. These are not cardiac symptoms. She is confident about going home and it's all she can think about.
I am overwhelmed....
All I can think about is that in the hospital there are teams of experts in all the fields with incredible nursing and doctoring degrees and psych degrees too and I am just a lowly mother. I am one lone person who is supposed to do 24-hour care of a person with a machine that can conk out? Ok, now I am terrified!
Hell!
Ok, they tell me. I have to learn the device. I have to learn to do dressing changes. I am going to see if Medicare can help for maybe 8 hours a day but 3-4 hours is more typical. Ok, that is reasonable.
We get great news. Kayla is now #30 on the list. Wow! But what does that mean? I am deflated when they inform me that it means she is #30 on the O positive list. Oh jeez...we have too long to wait. They are saying maybe a year. Now I am depressed. My poor baby!
All this news is a heavy burden on my shoulders now. I tell Mom and she says "Go get a lawyer and keep her in the hospital." I tell Mom, "But she really wants to be home. It's for her psyche. Gotta bring her home so she can feel normal."
I have a meeting with Dr. Columbo and the team - a planning issue meeting.
1. From a cardiac standpoint, Kayla is doing well. She is stable.
2. Pain Management - We need to lessen narcotic use yet she is still in pain.
3. Lungs are resolving - she is near the end of her antibiotic treatments. Her lungs are good. Wow! This is great news considering the long road she has emerged from re: her lungs.
4. We need to resolve the defibrillator issue. The wire keeps going on and making weird sounds and giving Kayla little jolts at times. It is burnt out now according to the most recent chest x-ray. What to do? They turned off the shocking mode but it still makes the sound 2-3x a day as it is trying to connect with the wireless source to transmit data. " Best made plans of mice and men"....Author John Steinbeck would appreciate this sophisticated machine not working like it should be.
5. Home care - Medicare 3-4 hours a day? 8 hours a day? I am one person, one untrained person!
Lots to ponder....
----------------------------
I keep thinking of my "lost dreams." I have 3 favorite possessions right now - Roget's thesaurus, my small, sweet reporter's notebooks and the larger notebook with lots of papers to draw information from. I love touching the little booklets and looking at my copious notes.
I drive home and swim a half mile in Great Pond. It is 72 degrees in the water and I am wishing for a wet suit but I don't own one. I swim long and slowly and there is not a breeze anywhere. The quiet all around chases all thoughts out of my brain.
My friend Kathy is very sad. Her hamstring is bothering her and it's her 23-year-old troubled girl cousin who has killed a 30-year-old woman who was a nanny. She hit her with her car as the woman was standing at the side of the road. Then she fled...a hit and run in Austin, Texas. Incredibly sad...
Short Synopsis: Kayla is very excited about going home. A lot of planning is being done to see if she can be discharged to go home to wait for a heart.
Long Story: Oh wow! It's the last day of May. I arrive at the hospital at 7:30 a.m. and get a bowl of oatmeal. It's the "best in the world," I tell anyone who is in the area. It's slightly gummy and absolutely delicious. I try to make it this way at home and fail miserably. It's just not the same. I put all the delicious stuff in it...raisins, brown sugar, cinnamon, stuff. I close the lids (one for Kayla too!) and go upstairs.
I beat out the Jewish man who has tried to take over my hidden corner. Of course he has every right to be there too but it's a contest to see who gets the space first. I do competitions everywhere...even beating out people for the coveted gorgeous view of the Hudson River corner. I notice he smelled bad. Was it his teeth? He has a big white beard which he wears like a bib for catching food. No, I am not prejudiced. He could be any religion. He just doesn't keep clean.
I hear a sad short story of a 30-year-old person who was hit by a car. I wonder about donor families. They are generous families and we need one or Kayla will not live.
I search for the chalk board to see if there is any news from my hospital families and there is!
------------------------------------------
Steph: Yes, leaving tomorrow for a few days. My mom is has been moved to Garden South, Room 340. How's Kayla?
Debbie
Steph: Hi--paid a quick visit. xox Steve
Debbie:
I will watch over your sister.
Steph
Steve:
Howdy stranger! Kayla is going home soon to wait for a heart!
Steph:
Great news! xoxo
Beth
------------------------------------------
I go to see Mom Cohen at 4:30 p.m. but she is not in her new room. They have taken her out for dialysis. Will have to go and see her later before I leave.
I bring Kayla the delicious oatmeal. It is definitely comfort food and we always enjoy it together. I am shocked when I see the bottom of her feet. They are completely black and swolen but she doesn't seem to care. She is only full of excitement for the idea of going home. The blackness came from walking all over the hospital with the therapist. These are not cardiac symptoms. She is confident about going home and it's all she can think about.
I am overwhelmed....
All I can think about is that in the hospital there are teams of experts in all the fields with incredible nursing and doctoring degrees and psych degrees too and I am just a lowly mother. I am one lone person who is supposed to do 24-hour care of a person with a machine that can conk out? Ok, now I am terrified!
Hell!
Ok, they tell me. I have to learn the device. I have to learn to do dressing changes. I am going to see if Medicare can help for maybe 8 hours a day but 3-4 hours is more typical. Ok, that is reasonable.
We get great news. Kayla is now #30 on the list. Wow! But what does that mean? I am deflated when they inform me that it means she is #30 on the O positive list. Oh jeez...we have too long to wait. They are saying maybe a year. Now I am depressed. My poor baby!
All this news is a heavy burden on my shoulders now. I tell Mom and she says "Go get a lawyer and keep her in the hospital." I tell Mom, "But she really wants to be home. It's for her psyche. Gotta bring her home so she can feel normal."
I have a meeting with Dr. Columbo and the team - a planning issue meeting.
1. From a cardiac standpoint, Kayla is doing well. She is stable.
2. Pain Management - We need to lessen narcotic use yet she is still in pain.
3. Lungs are resolving - she is near the end of her antibiotic treatments. Her lungs are good. Wow! This is great news considering the long road she has emerged from re: her lungs.
4. We need to resolve the defibrillator issue. The wire keeps going on and making weird sounds and giving Kayla little jolts at times. It is burnt out now according to the most recent chest x-ray. What to do? They turned off the shocking mode but it still makes the sound 2-3x a day as it is trying to connect with the wireless source to transmit data. " Best made plans of mice and men"....Author John Steinbeck would appreciate this sophisticated machine not working like it should be.
5. Home care - Medicare 3-4 hours a day? 8 hours a day? I am one person, one untrained person!
Lots to ponder....
----------------------------
I keep thinking of my "lost dreams." I have 3 favorite possessions right now - Roget's thesaurus, my small, sweet reporter's notebooks and the larger notebook with lots of papers to draw information from. I love touching the little booklets and looking at my copious notes.
I drive home and swim a half mile in Great Pond. It is 72 degrees in the water and I am wishing for a wet suit but I don't own one. I swim long and slowly and there is not a breeze anywhere. The quiet all around chases all thoughts out of my brain.
My friend Kathy is very sad. Her hamstring is bothering her and it's her 23-year-old troubled girl cousin who has killed a 30-year-old woman who was a nanny. She hit her with her car as the woman was standing at the side of the road. Then she fled...a hit and run in Austin, Texas. Incredibly sad...
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