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Thread: Jim's Journey

  1. #451
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    Hi Rose,
    I say it again, what a roller coaster life you and Jim lead! Your looming storm and your cancer care reminded me of this NYT opinion piece from Margaret Renkl in yesterday's paper - she reflected on the Tennessee tornado:
    The day after the tornadoes, I was texting with a friend of mine who moved to Middle Tennessee from Bay St. Louis, Miss. Her family had made it through Hurricane Katrina, a calamity that happened on a far larger scale, but making comparisons wasn’t what was on her mind. “Louis and I now talk about the ‘private Katrina’ our friends might have: cancer, death of a child, you name it. One day the sun is shining and all is intact, the next day everything is broken. And the rest of the world goes on. You’re trapped in your own crazy snow globe that’s been shaken so hard all the pieces fly loose.”

    xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com



  2. #452
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    ((((((Hugs to All)))))) ~

    Donna ~

    Margaret said it very well. Our snow globe has been shaken so much that the pieces will never fall back into place. Thank you for sharing her quote.

    I hope that you and Jim and Daisy are having a lovely vacation. How do you spend your days/evenings? I have to live vicariously, you know.

    Last night, we had another shake on our snow globe. Jim produced an enormous BM, at first formed but soft, and then what we call "soft serve." And it was black. Of course, this occurred while he was in bed, so I have now perfected a system of wiping, folding up the under pad, using several under pads until he's done.

    He produced a black stool last year, after he ate an Indian meal I'd prepared. He did have samosas yesterday, and while not really spicy, they are more than what he's used to eating. One of our dear friends, who has intestinal issues, told us that Tums can also cause black stools. Jim has taken probably too many Tums in the past week or so to conquer heartburn and hiccups.

    He had another BM this morning, which was also black.

    Nancy visited this afternoon, and she recommended that Jim drink a bit of baking soda in water to calm his heartburn. That's easy. So we'll try that. She also suggested that Jim eat yogurt. Since dairy is congesting for Jim, we can try coconut milk yogurt.

    Jim's right arm is swollen, because it's the arm he uses to push himself up in the bed. Nancy took his pulse and said that it was strong, so circulation was okay. Nancy advised us to put a couple of pillows under his arm to help reduce the swelling. I don't know why I didn't think of that. That's just common sense. When I said that to Nancy, she said, "Rose, you have a thousand things to deal with. It would have come to you eventually."

    Nancy listened to Jim's heart, which is strong, his lungs, which sound clear, and his gut. Gas on one side, bowel sounds on the other side. "She looked across the bed at me, and joked, "Rose! Let's make a run for it before he explodes!" We all laughed.

    She is going to get us an occult blood test kit, and she will visit next Tuesday for a blood draw, UA, and assessment. She will report to Dr. K about Jim's current status, the black stool, vitals, etc.

    I told her that Jim wants to cancel our appointment with Dr. K on 3/23, and she agreed. He'd have to go by ambulance, and that's just absurd for a follow up visit, when Dr. K will say the same things he always says to us. He doesn't have to see Jim to know what's going on with him. Nancy and I tell him everything.

    Nancy asked Jim if he needed meds for pain or anxiety. Jim said, "I don't really have a lot of pain. I feel a twinge now and then where my tumor is, but nothing like it was before."

    I inserted, "That's because he is in Jon's bed now instead of the futon nest." Nancy and Jim agreed.

    Jim said that he gets claustrophobic, but he doesn't really have anxiety. I interjected, "You have THC for that. It relaxes and calms you, and it gives you a bit of euphoria."

    Jim agreed, and Nancy responded, "That's good. But if you need anything, any drug for pain or anxiety or anything else, tell Rose to call me, and it will be here immediately. I promise."

    As Nancy was preparing to leave, Jim found "Monterey Pop Festival" on a cable channel. He turned it up, because Otis Redding was performing. Otis is Jim's all time favorite artist. He had all of Otis' albums and videos at one time. Nancy remarked that her husband likes Otis too. We just need to get her husband and Jim together to sit and watch an Otis video and talk "old man stuff." They'd both enjoy it.

    Then Jimi Hendrix performed, and Nancy started dancing and playing air guitar. Jim shouted, "Rock On, Nancy!"

    After a long and difficult day, Nancy came to us, as she always does, and let her hair down. She relaxed with us. She laughed with us. She unloaded her day's woes on us, which we gratefully accept, because she needs to let it out. She comforted us. She loved us in her very special way. The three of us always feel better when we've been together. Oh, and she brought us her tree's last avocado. She is a jewel.

    As she was leaving and bidding me farewell at the door, she reminded me, "Rose, call me, text me, any time, any day. If you need anything at all, I'll be here for you. You're doing a great job caring for him. Just know that you are not alone. Okay?"

    Got it. What a blessing she is.

    And this morning, John texted to check in to make sure all was okay. I texted a brief synopsis, and he replied, "Let me know if you need anything. Any time. Don't hesitate."

    I replied with my thanks and told him how much we love him. He responded, "Same here xoxoxoxo".

    God has placed so many truly wonderful people in our lives, who have blessed us in millions of ways.

    I think of all of the patients we've encountered in our last nearly a year of traveling together to Jim's appointments. Just incredible, brave, loving people. And all of the nurses, who have helped us. Dedicated, compassionate, caring people. Our EMTs couldn't be more lovely and caring, thorough and professional. But you know all of these people by traveling with us on our journey. And they are blessing you too in their care of us.

    And, of course, I often think about the paramedics and fire fighters, the police officers, the mortuary attendants, who were here for Jonathan. In that devastating moment, they all treated us with tremendous respect and compassion. All they had to do was look around our home to see the love we have for our children and the closeness of our family. Pictures of Jonathan and Michael everywhere. They could clearly see how ill Jim was then after just coming out of the hospital three days before. They were all a blessing to us then, especially the officers, who stood beside me at attention, when Jonathan was being transferred into the mortuary van. They knew Jonathan was a valiant warrior. And they knew how much I adored my beloved son.

    So, while our snow globe is shaken, the villagers in the snow globe always find a way to keep us floating. Love is oxygen for the soul.

    Thank you, Donna, and all of our dear friends here, who help us float and breathe. We love you and pray for you and your loved ones every day.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.


  3. #453
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    Rose, It's always reassuring to hear about the wonderful people in your life who care so deeply and will always be there for you. Glad Nancy could bring some entertainment and smiles!

    The coronavirus is getting very real here in NY! Over 200 cases at least 5 new ones right here in our town! All of the SUNY and CUNY schools are closing and going to online where they can. All gathering over 500 people are canceled. Even Broadway theaters are closing. St. Patrick's day parades are canceled. Shelves are bare as far as antibacterial wipes and cleaners. Luckily I always have a good amount of all that. We have always been extremely anal about hand washing and cleaning. My son is a portfolio manager for a bank and today they all worked from home to stress test the system. I'm really hoping that they will eventually close state agencies since my husband and daughter work for NYS. So much to take in and it all changes from hour to hour. I will NOT be taking Kathleen anywhere for a while. Today I'm making chicken soup because it feels good to do something and it smells OH SO good! Stay safe and healthy! Many prayers for you and Jim.
    Mary Grace

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  5. #454
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    Quote Originally Posted by mg12061 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Rose, It's always reassuring to hear about the wonderful people in your life who care so deeply and will always be there for you. Glad Nancy could bring some entertainment and smiles!

    The coronavirus is getting very real here in NY! Over 200 cases at least 5 new ones right here in our town! All of the SUNY and CUNY schools are closing and going to online where they can. All gathering over 500 people are canceled. Even Broadway theaters are closing. St. Patrick's day parades are canceled. Shelves are bare as far as antibacterial wipes and cleaners. Luckily I always have a good amount of all that. We have always been extremely anal about hand washing and cleaning. My son is a portfolio manager for a bank and today they all worked from home to stress test the system. I'm really hoping that they will eventually close state agencies since my husband and daughter work for NYS. So much to take in and it all changes from hour to hour. I will NOT be taking Kathleen anywhere for a while. Today I'm making chicken soup because it feels good to do something and it smells OH SO good! Stay safe and healthy! Many prayers for you and Jim.
    Mary Grace
    Yes this is the story about CUNY and SUNY. https://www.nydailynews.com/new-york...uym-story.html All my work is either online or cancelled as well. It's safer this way.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  7. #455
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    Thumbs up Improvement! Thank You!

    ((((((Hugs to All)))))) ~

    Mary Grace ~

    I understand your concerns so well. I know this is frightening for you and your family. And I know that Kathleen is particularly vulnerable. I send you extra ((((((Hugs))))))

    I just responded in length to jingle's thread in chit chat about the hoarding of toilet paper, as well as my thoughts on controlling the spread of the C-virus. As much as possible, we have to avoid everyone in our community!

    But, I think that this is the wave of the future, because C-virus isn't the first or the last pandemic for Earth. Telecommuting will become more common. We can do many things on the internet. Justin Trudeau is self-isolating, because his wife returned from a visit to the UK with the C-virus. That isn't stopping him from meeting on line with other world leaders.

    Perhaps people will become more conscientious about cleanliness and more diligent about protecting themselves and others from infection. That's a pipe dream, because after this is over, people will return to their usual ways.

    As I mentioned, Jonathan was in ICU during the Swine Flu, and a couple of other nasty flu bugs through the years. I remember one year, when ICU nurses and doctors were going home sick or staying with masks on and treating patients. I put my hand up! "Do Not Come In Here! Even with gown, mask and gloves. Please!"

    Last year in April, when I took Jim to ER, the MD, who came into his room was wearing a mask. We heard him coughing at the desk. When he started to enter the room, I said, "You can't come in here! You're sick with whatever this virus is going around now!" I pointed to Jim, "He has Stage IV cancer, dehydration, and his WBC is less than 1.0. Please don't come in here." He said he was the doctor, and he came in.

    Then, Jim was admitted. At that time, there were plenty of our anti-viral masks available, which I wore in the car with John, his wife, and his daughter, who transported me to/from the hospital, and while I was in the hospital. But those masks are out of stock now, naturally.

    Because we have a limited amount of anti-viral masks, we have to limit contact with people from the outside world. Nancy and John are the only ones we can allow in our home now, because they help us. Even then, I want to restrict that contact, if possible. Jim keeps saying, "Ask John to pick this that or the other thing up for us." I don't want to take advantage of John, but also we have a limited supply of masks and gowns. The more he visits, the less of those we have, which we will need, if we go to the ER. Whatever Jim wants I can order through Instacart or Amazon.

    I know that Jim already feels very isolated, and I do understand that. But, we have to think about the horrific outcome, if he or I get the C-virus, the flu, or even a "simple cold."

    Thank you for your prayers, Mary Grace, and we send you many prayers in return that you will all remain healthy and safe from this virus.

    funnylegs4 ~

    Yes, it is safer this way. Much safer. Prayers for you too that you are safe and remain healthy.

    JIM'S UPDATE

    Well, he's had two really good days. YAY!

    Yesterday, he ate an egg over easy atop 2 T of baked beans. No problem with gas, or indigestion. He also ate fruit and cashew ice cream. No vomiting, no gagging, some coughing, but not as much. He is wearing his dentures. I knew that would make a difference.

    His urine output is amazing. Yesterday, he sat on the side of the bed, and I measured his belly. It is 40", which is the lowest it has been for many months.

    Today, he asked for an egg on beans with a side of fried potatoes (I fry in Ghee). He enjoyed all but a few bites of that meal. No intestinal distress. He also ate 1/2 sliced fresh apple. Teeth. They make the difference.

    Earlier, I set up the iPad on Jim's over the bed tray, so we could watch the adorable video of the cat comforting the dog in the owner's absence. Jim loved it, of course.

    I found a movie for him on Netflix, and he's sleeping through it now. That's fine. At least it's a break from his other TV venues.

    We thank you all so much for your love and prayers, and positive, healing energy, which is working for Jim (and me) now. We love you, and we pray for you and all of your loved ones every day.

    Blessing upon all ~

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.


  8. #456
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    Hi dear Rose,
    We are heading home first thing in the morning tomorrow. Nick is fine, but in isolation for precaution. We'll likely be self-isolating for 2 weeks after our arrival (I hope we can get groceries - there's no insta-cart where we live!). We will rely on neighbours. We were supposed to visit friends this weekend who live nearby where we are in South Carolina, but we cancelled that and cancelled the last two weeks here. Of course there's not refunds but that doesn't matter. My brother in law is leaving on Monday two weeks early as well. It just feels like the right thing to do. We are fine - going from one very rural location to another in our car. No crowds or restaurants or anything. We will stay overnight one night (tomorrow) in a hotel but we have wipes and we'll only be there to sleep and we have our own food. I will keep you posted and I pray for more good days for Jim and you!!! Lots of love, Donna xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  10. #457
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    ((((((Donna)))))) ~

    Oh, my! Yes, I agree with you that it is the right and necessary thing to do. Do you have test kits in Canada, because there is a paltry sum of test kits in the U.S. right now. I strongly doubt that you've been exposed.

    It's best for Nick to be in isolation now, and I trust that his careproviders are following protocol to protect him fully.

    Your First Lady and Prime Minister are self-isolating now. Isn't that a strange and sad term? Thankfully, the internet exists, so we don't have to be cut off from everyone.

    We are praying for your safe travels home, and that you all stay healthy and untouched by the C-virus.

    We love you ~

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  12. #458
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    Thank you, Rose and Jim! We are fine - just skyped with Nick and his helper said he was quite quiet today. Nervous, probably. Anyway, he had his favourite nurse with him tonight and so we had a lot of laughs all together (we told him that we are coming home and bringing CASH LOL). He is doing well but sad that his sports are all cancelled. We'll be home soon :)
    We love you too! xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  14. #459
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    Hi Rose, we are in Winchester VA enroute home. We heard today from Nick's home that he's on lockdown and our Prime Minister has ordered all returning Canadians coming from outside the country (incl USA) to be self-isolating for 2 weeks. So, no visitors for Nick and we can't go out except for walks away from others. Luckily we have lovely friends on our road who will do our grocery shopping for us. And we will find all kinds of things to do and talk about on skype. We'll make do - it is the safe alternative. Thinking of you and hoping all is OK at your end. Love! Donna xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  16. #460
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    ((((((Donna)))))) ~

    Thank you for checking in and letting us know that you are safe.

    Jim is bummed about the sports being canceled too, but he did watch an Arsenal vs Tot game today with a huge crowd. It must have been a repeat of a previous game. Are the staff at Nick's home also isolated at the home, or are they allowed to leave and go to their homes? That would be difficult, I would imagine.

    I'm so grateful for your friends, who will shop for you. Be prepared, because things are in short supply.

    For the first time in the 2 years that I've been using Instacart, I was told yesterday that my order couldn't be shopped, as all of the shoppers were busy. My groceries will be delivered tomorrow. They even changed the delivery time of 2-3 to 2-4. I suspect that everyone is using Instacart to avoid going to the store. Just as I am and have been for over 2 years. It's been a Godsend for us.

    I watched an assortment of medical experts on various news programs today. I learned that Covid-19 is most transmissible when a person is asymptomatic. I've always believed that of "the flu," because it's the same thing really. A person feels fine all day, and suddenly at night, the person is sick. The incubation period is the same too ~ 14 days.

    I also watched a special with reporter Richard Engel, who is known for going into war zones and less than safe places. He was in China at Ground Zero. Footage of the now closed "wet market" was appalling. No sanitation at all with all kinds of live and dead animals, including bats. Bats carry a coronavirus, and when butchered along with other animals, the virus spreads. These wet markets are illegal, and yet they still exist.

    He then discussed the Chinese physician, who identified the virus as a potential epidemic, but who was silenced by the Chinese government, and then died from Covid-19.

    As I watched in tears, I thought, "All of this could have been prevented."

    Now, here we are. You take a vacation and come home to self-isolate for 14 days, unable to see Nick in person or leave your home. I know that you will make the best of it, as is everyone in your situation, I'm sure. But all of the self-isolating and social distancing and other new terms could have been prevented, along with thousands of deaths and the fear many people have of dying from it.

    I'm not sure how much calmer or more reassured people are being told to stay in their homes, not touch anyone, not touch themselves, wash their hands endlessly, while sports and entertainment venues shut down and the cases of Covid-19 increase globally. With a 14 day incubation period, this could go on for a long time.

    We pray for safe travels for you, Jim, and Daisy, and that you remain healthy, and Nick and the staff remain healthy.

    We love you!

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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