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Thread: Jim's Journey

  1. #521
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    Smile He Ate!

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

    Jim is feeling much better now in Jonís bed. John did a great job of rearranging, and the absent bed rail really helps to keep the air flowing. The mattress is alternating all the way across him now, instead of just on the right side of the bed. Heís comfortable.

    Of course, I still have to pull him up, but at least I can do that in Jonís bed, where it was impossible on the futon.

    He had a coughing spell this morning, took a breathing treatment, then I gave him his codeine cough syrup. He also took a T/C, as heís still aching from the two days of torturous movement to/from living room/Jonís room. He had a little tub of applesauce then fell asleep for 2 hours.

    When he woke up, we took our time pulling him up. I tried a new approach. I put the pillow behind his head, while he was laying flat, instead of when he is upright. That movement upright can cause a slide down the bed. I also elevated his feet (using the bed of course) a little more, which seems to have stabilized him somewhat.

    In a good position, and feeling no pain, Jim announced that he was hungry and wanted egg salad. Hooray!!! He had an egg and my yolk, lettuce, cucumber, and black olives. I season with dill weed, onion powder, garlic powder, and fresh parsley and mix with Vegenaise and Dijon. He loves it. I also gave him 2 Carr crackers, with cream cheese, cucumber and an olive on top. He ate 3/4 of the salad and 1 1/2 crackers. Then, he fell asleep.

    That doesnít sound like a 6 course meal, I know. But for Jim, after having eaten nothing but applesauce for days, this is the equivalent. Last night he ate a small portion of the concoction he requested: frozen pineapple, frozen mango, diced peaches and cashew milk ice cream.

    We were watching travel and cooking shows on PBS and Create TV, and it whet Jimís appetite. I watched him with joy and thanks in my being.

    I called Nancy to update her and ask her about morphine. She said she would call Dr. K and discuss it with him. She did, then she called and left a message, right after Dr. Kís message.

    I called Nancy first. She told Dr. K about Jim being moved to/from futon, described his malnourished condition, weakness, and pain in his shoulders, his hips, and his legs. He told her he didnít think it was time yet for morphine, whatever that means. He prescribed Norco/Vicodin.

    I looked it up, even though I know a lot about it, because my mom was addicted to it for diabetic pain. Boxed warning for people with COPD or lung disease, because if affects the respiratory system.

    No. No. No. No.

    The T/C works effectively for Jim, because he doesnít take it every day, let alone every 6 hours. Combined with the cough syrup, he gets relief.

    The pain he was been experiencing was the result of Jonís mattress not working properly, which also affected his ability to eat. The antibiotics affected his appetite. The UTI affected his appetite. The Ascites affected his appetite. If heíd been able to maintain a decent diet during these past few months, he wouldnít be in this condition now.

    In January, when he had the transfusion, he was still on the futon and able to walk short distances. He scarfed back the tofu stir fry and a slice of pie (even a few fries).

    By February, we needed an ambulance to transport him to/from his gut drainage. Thatís when he went to Jonís bed in early February. Of course, he had 17 lbs of fluid in him!

    While his blood work improved, he declined physically, because he couldnít eat. Gas, reflux, heartburn.

    Iím doing all I can to keep Jim hydrated with water, apple juice, Body Armor, tea, decaf espresso. If we can keep the bed running smoothly, and Jim can regain his appetite, even just a little, we might make some progress. Iíll see if I can interest him in an Orgain shake this evening.

    Dr. K said that we could call him to discuss the situation, or I could email him through the portal. I choose the portal. That way he can have in writing what Iíve just explained above. It will give him an overview of the past several months. I hope it will also demonstrate to him that I understand these things better than most patients/spouses.

    Nancy told Dr. K about John, and Dr. K was happy to hear that we had his assistance.

    Nancyís agency finally gave them supplies: 6 gowns, a handful of masks, shields, a box of gloves. Pathetic. If my Amazon order comes through on Monday or Wednesday next week, we should have 100 gowns. I told her that sheíd get a big chunk of those. Then she offered to drop off one of her gowns in our mailbox tomorrow, so that we have 2 gowns, in case we need to call John for help. God Bless Nancy.

    The last two days, let alone the last year or Ö my lifetime Ö I really stressed my back beyond its limit. On my feet running back and forth, lifting, bending, awkward positions on the futon, pulling, etc. Last night I took an Advil, which helped. This morning, I had to take another Advil.

    Itís been years since Iíve taken Advil. Thatís why one tablet works for me. And thatís why Jimís T/C works for him. He doesnít take it often or in multiple doses.

    Up to the minute, thatís all the news.

    You and your loved ones are in our prayers. Be safe, strong, resilient, determined, creative, and rest, because this is a good time to do just that. Rest is healing. Go outside and soak up sunshine, if you can do that with social distancing. I saw a video of a woman on her porch using a megaphone to talk to her neighbor on the sidewalk. Just because we canít touch each other physically doesnít mean that we canít stay in touch with the ones we cherish.

    Thank you for walking beside us on our journey and for the privilege of walking beside you on yours.

    Send Prayers Around the World!

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!

    P.S.: Please ignore the typos in my headings. The above post was supposed to say "Back" not "Bad." I'm tired. Guess that's obvious.
    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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  3. #522
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    Thumbs up A Working Mattress Makes A Huge Difference

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

    Last night, I fell asleep on Jon's chairbed, while watching Jim sleep. We woke up about the same time, whereupon I cleaned him and pulled him up in bed. I stayed up until 2 a.m., as he felt like he might have a BM. A few false starts with that yesterday and today. After the last one at 2 p.m. today, he took MOM.

    The mattress is still working well. It's easier to pull Jim up and to rearrange the bottom sheet now.

    We're both still recovering physically from the BIG MOVES. Jim still has pain in his lower back, so he took a T/C this afternoon and is sleeping soundly on his comfy bed well situated. I took an Advil this morning, when I got up. I tried to resist it, but I realize that I'm useless, if I'm in constant sharp pain. It helps. Also, I knew that I had to throw loads of trash collected in the garage into the bins and cart the bins down the driveway to the curb before 8 a.m. I needed some relief to be able to do that.

    Jim wanted tater tots this morning, which we don't have. I substituted seasoned waffle fries, which was fine for him. He only ate a few, but at least he ate ssomething. I baked beets today, a favorite of Jim's. He's asked for egg salad with beets, avocado, cucumber and olives for his next meal. This is a sign of progress that he is thinking about food, what would taste good, appeal to him, and not being afraid of eating causing reflux/heartburn.

    Two things need to happen soon for him: 1. A BM, 2. Lasix to get rid of the fluid in his gut.

    As soon as he wakes up, he'll have something to eat and Lasix.

    I managed to wash my clothes, as well as sheets for the futon today. They're still in the dryer and washer, but it's a start. I've been wearing the same clothes since Tuesday. I'm afraid to shower, because of our plumbing issues, so I stave it off until I can't stand it any longer.

    I've also lost quite a bit of weight, and my clothes are falling off of me. I'm trying to eat more now. I added an egg/veggie ham/cheese sandwich on sour dough to my share of waffle fries this morning. I burn off a lot of calories taking care of Jim and managing stress. I am taking my vitamins, so there's that.

    Jim is getting his vitamins from drinking Body Armor. John told us that this was a product endorsed by Kobe Bryant, and that Kobe made many of his millions from promoting it. Unlike Gatorade, it has added vitamins and minerals. It's made with coconut water. So, every time I pour Body Armor into Jim's glass, I think of Kobe, Jonathan, Michael, the Lakers, and Kobe's wife and children.

    I remain overwhelmed by the plumbing issues. I still haven't had a moment to clean out Jon's closet, nor the energy, nor the stamina. I need what I have left in those departments to take care of Jim.

    I'm hoping that over the weekend, I will be able to finish my laundry, put clean sheets on the futon (a job that hurts my back a lot), take a shower and put on clean clothes, and work on the closet. For me, those are very high aspirations!

    We thank you for your prayers, love, and friendship. We love you and pray for you and your loved ones every day. Blessings of health and well being upon you all.

    Send Prayers Around the World!

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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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  5. #523
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    Default House of Pain

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

    First, good news! Dreading opening Jon's closet door today, I was surprised to discover that the floor was dry, and it appears the leaking has ceased. I saw no dripping. This buys me more time to get organized for the plumbers.

    Not so good news ~ Jim's pain. The manhandling he endured between beds has just done him in. I strongly suspect that he's having an RA flare.

    BMs also started last night and continued today. Every few minutes, Jim would say, "I'm going," but nothing was there. Another problem is that with his pain, he's unable to assist me by lifting his hips, so I can access his "poop chute." It was impossible to clean him, when he did produce small amounts, because I can't get underneath him. I did my best, but I had to put another under pad on top of his soiled one.

    Last night, he ate a fork full of beets, and a fork full of egg salad and trimmings. That's it. Then applesauce later to take his T/C . He was unable to keep up with his hydration, because of his position in the bed. So, I pulled him up twice. Still, I had to supervise and assist with his fluid intake. Today, he was dehydrated, so I stepped up the Body Armor and water. The bowels are competing for the water with the bladder.

    It was a long night, with Jim calling me twice for a BM event, or not. By this morning, he was wiped out.

    For his leg pain, I applied Aspercreme, his heating pad, then ice up and down his left leg. We tried elevating and lowering his legs. I gave him his daily Prednisone, which he'd missed in the morning, a T/C, and some codeine cough syrup. He finally settled down and is sleeping. I was able to get a shower and clean clothes. I've been on my feet, jumping up to fulfill his requests all day.

    I had to take an Advil this morning. I feel Jim's pain, because I have it too. Not all over as he does, but in my usual, most vulnerable places. Later in the morning, I took another Advil to keep me moving all day.

    The moves really did a major number on both of us.

    His SATS dropped to 87, so I put him on O2 at 2 liters. Heart rate in the mid 80s, which given his pain level is good. His SATS came up to 93, and that calmed him.

    Desperate for rest and sleep, Jim asked me to get his sleeping pills. "You don't take sleeping pills, honey. We don't have any sleeping pills."

    "Oh. I thought we did."

    I found his favorite English TV show, "All Creatures Great and Small" on YouTube. I set up the iPad on his side table, since he is leaning to the right, as per usual. He is delighted. It's still running, as he sleeps.

    I still haven't brought in the trash bins from the street, and I have a slew of trash to put him them. That will wait, I suppose til tomorrow. My next goal will be to put the clean sheets on the futon. I know that will make me feel more comfortable.

    So, there you have our exciting and excruciating Saturday. I'm so grateful that Jim is finally sleeping, and I pray that he wakes up in less pain. I'm going to give him an extra 5 mg Prednisone, when he wakes up, as I do feel his RA is flaring.

    Thank you all for your love, prayers and support. We love you all and pray for you and your loved ones.

    Send Prayers Around the World!

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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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  7. #524
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    Ohh man, Rose - some good news and some hard stuff. I am grateful for the good news!!! I am sorry for your aches and pains. A 2 Advil day for you is a really hard day. I LOVE All Creatures Great and Small - it's one of our fave shows too! Today I baked all day for my sister. I'll put it all in a box and take it to the post office on Monday. Hopefully they will do overnight delivery to Montreal - it's not that far, only 2.5 hours away. There are road blocks up though so I can't go.
    Lots of love and thinking of you always,
    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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  9. #525
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    ((((((Donna)))))) ~

    Your sister will be so pleased with a box of baked goodies from you. I know it's all delicious and will be comforting. Keeping the prayers going steading for your brother in law, sister, niece, and entire family.

    If you love All Creatures Great and Small, go to YouTube, and you can binge watch a ton of it. It was on the iPad all afternoon to the point where the energy left in the iPad was 9% this morning. Unfortunately for Jim, he slept through most of it.

    Today, Jim found a movie on cable, and then he fell asleep. I watched the end of that movie, while keeping an eye on Jim. Then another movie, and another movie. Jim still sleeping. The next movie, "Fighting With My Family," is one that maybe Nick would enjoy. It's a true story about a British family, all of whom are wrestlers, and their daughter, who worked hard to make it to the WWE. Jim stayed awake for the first half of it.

    Left leg has no pain today, but his right leg at the knee is painful. So, 5 mg extra Prednisone and a T/C. Aspercreme and a heating pad, followed by ice pack. He stayed up in the bed pretty well last night, and I haven't pulled him up yet, because he's been sleeping.

    Unfortunately, his BMs created quite a mess, and without him being able to lift his hips, I can't adequately clean him. He said, "I feel brave now, if you want to turn me on my side." I shook my head, "no."

    I need to clean him and change his sheet, but I don't want to risk further pain in the process of turning. When we get this pain under control, then we'll do that. For now, under pads are the best solution.

    Between movies, he did vomit a small amount of liquid, because he has no food to speak of in his system. So far today, I've fed him half of a small tub of apple/peach sauce with his meds. Sips of water and body armor, but no tea today. That's surprising, and I hope this evening, he'll want tea.

    I speculated that Jim is having an RA flare, and he agreed. I asked him to remember his initial response to Opdivo. He nodded, "Yes, it's that same kind of pain."

    I sent 4 emails (1000 characters limit, so it ended up being 4) to Dr. K describing the last 4 months for Jim. I covered everything, including that Easter was Jon's first Angelversary. He should know that we have more than physical pain going on in our life.

    As long as T/C addresses Jim's pain adequately, he's not interested in trying anything else. He's reluctant to change meds, because he fears the side effects. Look at what the three antibiotics did to him.

    He still hasn't had Lasix, and I want to give it to him, but his fluid intake is insufficient, so I fear dehydration. But his Ascites isn't resolving by itself. That will be my next email to Dr. K.

    Yesterday, while Jim was sleeping, I watched "One World: Together At Home," from Global Citizen. This is a project, initiated by Lady Gaga, who opened the last two hours of prime time performances. Artists from around the world participated, including Elton John, Paul McCartney, Stevie Wonder, Taylor Swift, John Legend, The Rolling Stones ... long list ... performing one of their famous hits or a cover honoring deceased artists.

    The purpose of the project is to honor all of our first line workers, health care providers, delivery, grocery workers, police, firefighters, EMTs, teachers. Interspersed between the performances were clips of these heroes on their jobs.

    I cried the entire two hours, with breaks to check on Jim, of course, still weeping and wishing we could watch it together.

    I highly recommend watching this "replay" of the prime time version. It's 2 hours of time, but it's worth every second. It ends with Lady Gaga, Celine Dion, Andre Bocelli, John Legend, and Lang Lang performing, "My Prayer." Such beautiful voices together.

    https://www.youtube.com/watch?v=2Igx-5Kej8k

    After I watched it, I realized it was something, which I needed to do to help me through this time of crisis in our world, in our country, and in my own home.

    We love you all and pray for you and your loved ones, as we give thanks for your love, caring, prayers, and continuing support.

    We are in this together. Thank you for that blessing.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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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  11. #526
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    Default Journey's End Is Nearing

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

    This evening, Jim turned a corner. He is disoriented, refusing to drink fluids, fidgeting, restless, unable to sleep, and communicating less. His urine output for the past 5 hours has been zero.

    SATS: 87 HR: 115. I put him on 2 liters of O2. I canít get a BP on him, as the monitor goes to ďerror.Ē

    I called Nancy, and she said he might need a blood transfusion, but I know that he cannot tolerate an ambulance gurney or the commotion of an ER. Also, I will not be allowed to accompany him, because of COVID-19.

    Iím calling Dr. K in the morning, will ask for hospice. Nancy will call the agency to set up hospice visit for intake. Nancy will visit at 11 tomorrow morning.

    It will be a long and lonely night. I wouldnít be surprised if he passes before the morning, but I am sure now that he wonít improve. Iím doing all I can to make him comfortable, and I know hospice will take care of that for him.

    My heart is breaking ~

    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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  13. #527
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    I'm praying for both of you.

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  15. #528
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    Our hearts our breaking, too, Rose.

    ANN
    There comes a time when silence is betrayal.- MLK

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  17. #529
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    Rose, This is truly heartbreaking news. You have brought Jim so far in this journey with your love and your tender care. You will bring him through this next part of the journey with the same love and care. I hope you have the loving support around you through this. I am sending many many prayers, love and warm caring hugs your way.
    Mary Grace

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  19. #530
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    Rose I am so sorry, am praying for you both. ((((HUGS)))))

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