Announcement

Collapse
No announcement yet.

Jim's Journey

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    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

    Comment


      Love Is Oxygen For The Soul

      ((((((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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        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

        Comment


          Originally posted by mg12061 View Post
          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. Only registered and activated users can see links., Click Here To Register... 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

          Comment


            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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

            Comment


              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

              Comment


                ((((((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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                Comment


                  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

                  Comment


                    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

                    Comment


                      ((((((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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                      Comment


                        Sleep, Eat, Sleep, Watch TV, Sleep, Eat ...

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

                        Donna ~

                        Thinking of you as you travel homeward. Praying for safe travels. Sending lots of love.

                        For those, who might be interested in our "C-virus adventure" today, please see jingle's post, which I posted in earlier today:

                        Only registered and activated users can see links., Click Here To Register...

                        Meanwhile, with Jim ...

                        He's still staying up all night watching TV. Last night, he watched an animal channel for hours. Then, he's just wiped out in the morning, throughout the day and evening. He was too tired to let me change his britches this morning, and he needed a nap. I do understand, but I worry about a UTI, when he's in wet britches. We may have to discuss the condom catheter again, depending upon the results of his UA and blood draw by Nancy on Tuesday.

                        As for supply hoarding, I plead guilty. I've been doing it for months to get ahead of any kind of crisis. So, we have plenty of options for Jim. I just ordered Depends for Men guards today, which we put in Jim's britches to help absorb more urine. They won't be delivered until 3/19 at the earliest.

                        Jim ate about a quarter of his breakfast: oatmeal, apple sauce, prunes, and strawberry preserves. He ate an oatmilk yogurt, which I ordered through Instacart today (see Jingle's thread). He asked for his decaf espresso and a couple of gluten free cookies, which he enjoyed. For dinner, he wants spaghetti noodles with pasta sauce. No veggies, no Field Roast Italian sausage. Just sauce and noodles.

                        At this point, Jim is holding his own with just enough nutrition to keep him going, I think. He remains well hydrated. His vitals are good. Fatigue from cancer, from the radiation, from just trying to battle through this every day, is the biggest factor for Jim right now.

                        While he is awake or drifting in and out of sleep through the night, when I am sleeping in his futon nest, he hasn't had an urgent need to call me for a few days. This is a blessing for Jim and for me, of course, because I am able to get a few hours of straight sleep. I am still struggling with the time change. Jim might be too, but generally, he is never sure what time it is, although he has clocks and the TV in the room. And he sleeps whenever he sleeps.

                        So, for now, that is us.

                        We thank you all for your love, prayers, positive, healing energy and return it to you and your loved ones ten-fold. Be healthy. Be safe. We Love You!

                        Love & Light,



                        Rose
                        Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                        Comment


                          Rose, Can't blame you for stocking up on all your's and Jims needs. You can't be without those things and you can't run out to get them. Life here in NY is kind of surreal... Empty shelves everywhere. We pretty much have what we need and as far as food I can certainly get creative with what's in my pantry and fridge. I'm going to get a couple of Kathleen's perscriptions today that are low. Hopefully they'll fill them even though they aren't due. Schools here are all closed and businesses are being urged to close. I'm thankful that Kathleen's party wsa last week. If it was this week we would certainly have to cancel. Last week there were I think 100ish cases in NY now it's over 700. We were planning a surprise 60th party for my husband the first week in April which I'm certain we'll have to postpone. My sister was to be leaving for vacation to Florida today but they canceled. I'm hoping for nice weather so at least we can get outside for walks and bike rides. My daughter Kelly and I watched 2 movies with a little but of a scare factor call us crazy! Contagion, and Outbreak! Stay safe everyone!
                          Mary Grace

                          Comment


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

                            Mary Grace ~

                            You and your sister are in good company, because apparently lots of people are watching those movies right now. Netflix has a documentary called "Pandemic", which is also trending.

                            I don't need anything to make me more nervous about the C-virus, so I avoid those movies.

                            One of our friends had a vacation to NYC planned, with tickets to a Billy Joel concert and 4 Broadway shows. Initially, I begged her to cancel, and then she had to cancel, because Broadway went dark, and Billy canceled.

                            Realistically, we have no idea how many people in the U.S. are COVID-19 positive, because we don't have enough testing kits. Our hospitals are not prepared for an onslaught of seriously ill C-virus patients. Not enough ICU beds or ventilators.

                            To me, this is appalling that we aren't prepared to handle a pandemic. Or any disaster, like an earthquake, flood, hurricane, tornado. We should be ready for anything, since all of those catastrophes and more have occurred numerous times over in the history of our Planet.

                            Isn't it heart-wrenching that people scramble to get the last package of toilet paper out of sheer desperation? More stress for everyone, because we are not prepared for this pandemic.

                            We were told initially that it was fine, just like a common cold, nothing to worry about. Now, we have a pandemic, the stock market is a mess, people are not working, not being paid, self-isolating, social distancing. Honesty matters.

                            All we can do is wait it out and do our best to be as safe as possible.

                            JIM'S UPDATE

                            Nancy confused the date for our visit, so it has been deferred to Friday.

                            Dr. K's office called and left a message today cancelling Jim's 3/23 appointment. The reschedule month is July.

                            When I told this to Jim today, Jim said wryly, "I hope I'm still here in July."

                            I hope so too, because we'll celebrate our 28th anniversary.

                            Jim had difficulty pulling himself up in the bed today. He was sinking into the mattress and in the wrong position in every regard. Eventually, I unlocked the bed brakes, pulled the bed away from the wall, and pulled Jim up in the bed using his bottom sheet. It was somewhat successful. Then, push the bed back, lock the brakes and try to refit the bottom sheet on the bed (not an easy task).

                            It was exhausting for both of us. At the end, I said to Jim, "Remember how you said the other day that I'm always right?" He nodded. "Okay, then, we're going to do it the way that has been the most successful, and you can stop trying to invent new ways of getting up in the bed. Feet down, head up, ladder, me with my hand on your back to support you as you raise up. No other way works, so stop trying to think of them. Thank you."

                            Jim agreed. In his efforts to help me and himself, he makes it harder on both of us.

                            He ate 3/4 of an egg and a few fries (per his request after a long morning nap). A cup of diced peaches. Tonight he wants to have last night's leftovers of mashed potatoes, gravy, and peas. Of course, as always his eyes are bigger than his tummy.

                            Waiting for a BM, but he's not in discomfort. I don't know whether he has enough food in his system to promote a BM.

                            Up to the minute, that is us.

                            We love you all, pray for you and your loved ones to be safe and healthy, and as free of stress as possible in this very stressful time. We are not alone. We have each other.

                            Healing prayers and positive energy for all ~

                            Love & Light,



                            Rose
                            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                            Comment


                              HI dear Rose
                              I'm sorry that I've been incommunicado the last few days! We got home from South Carolina just fine and the next morning I woke up feeling unwell. Sore throat and fever but no cough or anything else. I called our doctor and we talked over the C virus - he said he was virtually positive that I had another virus but if things changed, he gave me the address of the C testing clinic (not a drive through). I am MUCH better now and we are isolated for 14 after travel anyway, so it's onward and upward for me. I cleaned the bathrooms today, made muffins, changed the sheets and taught an online class. Even though we are not allowed out, it feels like there is so much to do! I miss Nick so much. But I know that he is safe - he is in his own room with carers he knows and loves who go only home and back again to be screened before they enter the building. No where could be safer for him. He is one of only 3 left in the big building and the nurses are doing a great job. Everything is such a worry these days. I have thought of you so often reading about C-virus protocols in isolation and keeping everything clean and sterile. I think, my friend Rose has been doing this for years! Everyone should take lessons from you! I am so glad that Jim is eating and that he's keeping his spirits up with your help. But it's a worry that he is losing strength making it harder for you to help in bed. Does this mean that John will have to come over help the way he did with Jon? Thinking of you so often my dear. 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

                              Comment


                                ((((((Donna*)))))) ~

                                I'm so sorry that you were ill, but I'm thankful that you have improved. Has Jim had any symptoms similar to yours? I pray that you continue to be well, both of you.

                                Oh, I know how much you must miss Nick and long to be with him during this crisis. Are you at least getting a chance to FaceTime? How grateful I am that Nick has such superior care. I know that is comforting and reassuring to you and Jim. Where are all of the other residents of the home?

                                This must be hard for Nick with soccer (er ... football) being suspended, just when Liverpool was about to clinch the title! Hockey, baseball, basketball, all suspended. Please tell Nick that we empathize with him, as we were sure this was the year the Dodgers would win the World Series (cheated out of it by the cheating Astros).

                                Sadly, I'm feeling like this virus is going to be our new normal. Look at what climate change is doing to our planet. Scientists give us 10 more years before it's too late to turn things around. A pandemic is bound to happen, when we don't have control of our climate, or strict worldwide enforcement of safe food/unsafe food, or preparation and every thing mis en place for any kind of crisis, be it war, or natural disasters, or pandemics.

                                The entire world is in chaos, because no country was truly prepared for this catastrophe. It's mind boggling. Do we all live in a bubble?

                                I've lived through earthquakes, one really large and damaging one for us in 2014, so I have always endeavored to be prepared. That's why we have toilet paper, and I'm not running to a store in panic. That's why every month, we have 9 cases of bottled water delivered and stacked in our garage. That's why I try to keep all meds refilled on time. It's impossible to get a "tide over" batch of meds for a crisis. That has always troubled me.

                                For Jonathan and Michael, every year, I had to stuff a freezer bag full of essentials for them to take to school in case of a disaster or emergency. That meant seizure meds, and I had to get special orders for those extra meds. That meant a clean shirt/pants, juice box, canned fruit, diapers, spoons, cups ... And yes, I did squeeze all of that into a freezer bag! I had that down to a science!

                                So, if I can be prepared for an emergency, catastrophe, crisis, why can't the leaders throughout the world do the same thing?

                                I know exactly how many ICU beds and ventilators our hospital has. It isn't enough. In Italy, physicians are choosing patients to save and patients to allow to perish. Doesn't this sound barbaric for 2020?

                                ABOUT JOHN

                                As for John visiting to help me pull Jim up in bed, unfortunately, we have to socially distance ourselves from John and family now. John is still working, in of all places, grocery stores, as he is a rep for a distributor. He has a teenage daughter, who I suspect is having trouble with socially distancing. And his wife is an executive, who travels up and down the coast for her company, although she does work at home too. Their favorite social activity is going out to eat or getting food and bringing it in.

                                I don't know what John has been doing this week, and I should text him to find out the latest with him. He has offered to help in any way that he can, but my fear of the virus right now is approaching TILT. Also, John couldn't be here every time Jim needs to climb up in the bed. This happens about every 3-5 hours day and night.

                                Jim sleeps in the morning to afternoon, then in the evening, so at night, he is awake and watching TV. Last night, after I climbed in bed, he called me to bring him some tea, and something else, which I can't remember. About an hour and half later, he called me. MOM was working, and he was having a very nice, good colored BM in bed, of course. I returned to bed about 1:30 a.m., and then Jim began coughing, needing a breathing treatment, and pulling up in the bed.

                                TOMORROW

                                Nancy will visit. There was confusion over her schedule, so we moved it to Friday. Blood draw, UA and she will bring an occult blood kit to test his stool. I hope that she will also bring isolation gowns, which I am having trouble finding and running low on, as well as alcohol wipes.

                                JULY

                                I called Dr. K's office today, and Jim's next appointment has been rescheduled for July 17. I remarked to the scheduler that it's quite possible that the virus will still be active then, so we can be hopeful that it won't be and that Jim will still be here and strong enough to make the appointment. The first date she offered to me, I replied, "That is our anniversary."

                                She said, "Oh no. Well, we can't have that."

                                July. That is 4 months from now.

                                Donna ~ we pray for you, Jim, Nick, Natalie, and your beautiful family that you will all be well and safe and weather this crisis with your inimitable courage. We love you.

                                We love all of you and send healing energy and prayers during this difficult time.

                                Love & Light,



                                Rose

                                *Virtual Hugs Are Germ-Free!
                                Last edited by Earth Mother 2 Angels; 03-19-2020, 08:50 PM.
                                Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                                Comment

                                Working...
                                X