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Thread: Jim's Journey

  1. #411
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    Thumbs up Success!

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

    Well, Jim had 7.7 liters of fluid removed, which is equivalent to 17 pounds! Yikes!

    The EMTs allowed me to sit in the back with Jim. One of them commented that we are "delightful." When I asked for clarification, he answered, "The last patient we transported was difficult in several ways. You two are a breath of fresh air after that run."

    I was allowed to stay with Jim the entire time, which was wonderful for us. We had the sweetest tech caring for Jim, and a nice young man, who was observing to help him determine which specialty he wants as a career. They were with us the entire 2+ hours for the draining. They heard our entire life story!

    FIRST EMTS

    Our EMTs were great. The young men who took us to the hospital ended up waiting for over an hour. They took us straight to radiology, instead of the lab. They said, "They'll send a phlebotomist to us, so you don't have to hang out in the lab." They coordinated the lab draw, which was done in the mini waiting room (vacant at the time), while Jim was still on the gurney.

    While waiting for the results, Jim asked me to get him a coffee from the cafeteria. The new cafeteria is in the new towers on the ground floor, but it is a good distance to walk from radiology. Also, it was lunch hour, so the cafeteria was swarming. There is a Starbucks coffee bar, and Jim requested cappucino. First, I bought a bottle of water for me, as I only brought one bottle for Jim. (I carry the bag, and water, as noted above, is heavy.) I also grabbed some french fries, because I was really hungry, and that seemed the easiest thing for me to eat. But their Mediterranean veggies looked yummy. Then, I got Jim's coffee, and trekked back to radiology with full hands.

    As I came down the hallway, one of the EMTs was standing at the end looking for me. It was so sweet how they worried about us. He walked toward me, and said, "Here, let me help you, Rose. Are you okay?"

    I was sweating, but I answered, "I walk a mile every day around our neighborhood, when I can. I haven't walked for 3 days, because Jim has been so sick. So, I'm a tad out of shape."

    The other EMT asked me how long we've been married. Then, he asked me, "What's your secret to a good marriage?"

    "Love. You have to mean it when you promise to love each other for richer or poorer and in sickness and health. Next is a sense of humor. It's so important to laugh together, to have 'inside jokes' from your years together, and to try to find humor, even in the most dire situations. Next, is to recognize your partner as your best friend. With all of that comes trust, communication, which are vital to a lasting marriage. We talk about everything, and we have no secrets."

    His response, "Wow!"

    "Here's more: we've been together every day for 24 hours a day with the exception of Jim's hospitalizations for almost 28 years. And together, we took care of our disabled sons for 25 of those years."

    Again, "Wow!"

    THE PROCEDURE

    Finally our sweet tech came out to get Jim and put him on their bed in the drainage room. Off of that hard gurney, which the EMTs had elevated head and feet, which Jim said was comfortable. The lab results weren't in yet, but she started preparing with the belief that he would be fine for the draining. She had everything set up for the doctor, who happens to know Jim from doing one of his biopsies. Such a friendly and jovial man, and Jim loves him and his partner.

    Blood work was good, so we went forward. Oh yes, Jim's WBC is 6.3!!!! It rose from 3.7, even with his illnesses. Amazing!

    Jim had pain during the insertion of the needle with lidocaine, and he squeezed my hand. He said, "It's okay. It won't last."

    Tube in, machine on, and within a few minutes 2 liters had been pumped out.

    The tech told Jim not to wait so long next time. Jim and I assured her that we would not. She said, "We don't like to stick a needle in you to do this, if you have less than a liter of fluid. But, if you start gaining water weight again, make an appointment, so we can spare you the misery you've experienced."

    We talked about how much weight Jim has lost, because he couldn't eat with that much fluid in his body. She nodded with understanding. Then we talked a lot about food, as she is from India, and of course, that is Jim's most favorite cuisine.

    Jim then announced that the first thing he wanted to do when we got home was sleep, which he is now doing. Then he wants a cup of tea and then he wants to eat without fear of vomiting. She agreed that sleep and rest were important after the trauma of the drainage. Any invasive procedure is trauma to the body.

    The doctor asked me if I wanted to stay while he inserted the tube. OF COURSE! He then said, "I wasn't sure whether you might be squeamish or uncomfortable."

    I laughed. "Doctor, I've seen it all. And I do mean ALL. I want to be here with Jim."

    And then he laughed, and I could tell he knew I was serious.

    SECOND EMTS

    I called the ambulance company, when Jim's drainage was nearly finished. The dispatcher was so friendly, but he did ask me why "the facility" wasn't calling for Jim's pick up. I said, "Well, I called for the first pick up, so I thought it would be okay to call for this one. But if you want to speak to the person in charge, she's standing right here." Nope. He was just curious.

    About 25 minutes later, a sweet young lady and young man appeared to take us home. The young man walked in to greet us, then he asked Jim these questions: "What is your name?" "Do you know where you are?" "Do you know where you're going now?" Jim obediently answered each question, and then the EMT took his BP. It was low 98/68, but that's expected after losing 17 pounds of fluid.

    Jim was able to get off of the bed and onto the gurney with their assistance. He didn't need to be transferred by the EMTs to or from. He didn't need his inhaler once.

    Once home, the young man said he would come into the house to check out the arrangement. I said, "That's okay. Trust me. We've been here a million times before, and our home is gurney friendly. I move furniture."

    Our entry way is a concrete ramp, and we have double doors for easy access.

    I went in to turn on the alternating mattress, put it on static, so it would be firm for Jim's transfer, then I opened the doors.

    All went smoothly. The young man noticed all of the Lakers stuff on Jon's walls. Jim explained that this is Jon's room, which he is now using, and then we explained about Jonathan and Michael. The EMTs were so touched. We showed them Jon's and Michael's photos, and they both remarked, "How sweet and handsome."

    I became emotional when I told them how much Jonathan loved Kobe. I said, "I just pray that Jon and Michael have met Kobe and his daughter now. Jon just loved Kobe so much."

    The young man told us that he has a niece, who has special needs. "She's 32, and she's doing well, thanks to good care, like your sons received. So, I do understand, and I am so sorry for your loss. I really am. They are beautiful boys."

    Everyone we encountered today couldn't have been more loving or compassionate toward us. We enjoyed laughing with them, and they learned a lot from us about life and its challenges.

    THE AMAZING TRANSFORMATION

    I watched Jim's belly deflate with awe today. I kept touching his tummy, feeling its softness, and just giving abundant thanks for this relief for him. I can't describe how painful it was for me emotionally to see his gut swelling, knowing that he couldn't tolerate even water, without feeling nauseous. And I saw Jonathan, when I looked at Jim in the bed. His swollen belly, his retching, his pain, his weight loss.

    That's when I was determined to have his gut drained and essentially demanded it from Dr. K.

    Now, we move forward, and Jim will have room for nutrition. He will have an appetite. I can cook again, instead of just handing him tubs of applesauce. He'll be able to return to his Orgain shakes.

    And we will never let this happen to him again.

    So, for today, that is us. It's been another remarkable day, with positive outcomes.

    We thank you all so much for praying for us, being with us today, loving us, and supporting us. We love you, and you and your loved ones are always in our prayers.

    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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  3. #412
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    Rose, I'm so glad I came to read this today! It made my day! I truly have happy tears for you and Jim. I'm so thankful that you both were treated so kindly and with the respect that you deserve. I'm sure this is because you both Emanate love and respect. It reassures me that you get what you give. This has been a very difficult journey for you both for so long but I believe it is not for no reason at all. You both have touched and i"m quite certain changed so many lives and given hope and a new outlook to everyone you have been able to share your story/journey with. I'm so glad there was good news. Praying always for healing, and comfort. thank you for including us in your journey!
    Mary Grace

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  5. #413
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    Rose, that is wonderful news. Anytime there is good news we rejoice with you and when it is not so good we are sad with you. I do hope you and Jim have a good day today. If he is not too tired out from yesterday maybe he will be able to eat some food that he enjoys. Praying!
    Virginia

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  7. #414
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    Default Post Paracentesis

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

    Mary Grace & Virginia ~

    Thank you for your love and prayers. We are so grateful to have you walking beside us.

    Jim slept soundly for 5 hours. It was an exhausting ordeal. He woke up with aching knees, probably from being on the gurney for so long. He only wanted applesauce and peaches. He will have to gradually increase his intake, because his stomach has probably shrunk from lack of nutrition.

    I ordered from Instacart today, and I finally was able to get him some cashew milk and coconut milk ice creams. He had a small bowl of the cashew milk. The next meal he wants is an egg over easy with fried potatoes.

    We're not sure why, but his SATS dropped to 87 today, and he went on O2, first at 1.5 then to 2.5 liters. Logically, without all of that pressure from his 17 lbs of fluid, we expected his SATS and heart rate to be better. He's off of O2 now, so we'll just have to see where it goes from here.

    The gut fluid is being tested, as it was in October, for cancer cells. We're praying for the all clear there.

    Up to the minute, that's our news.

    Thank you all so much for supporting us with your love, prayers, advice, guidance, and healing, positive energy. We love you and return to you and your loved ones those blessings.

    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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  9. #415
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    My dear Rose,
    I am home now and have been catching up on all your news. I am so glad that Jim had the drainage! I feel very hopeful that his appetite will come back. The procedure itself must have been so exhausting and just taxing to his whole body so perhaps that's why his sats dropped. I send you both all my prayers that Jim will feel better very soon being rid of so much fluid!!! Prayers too that there are no cancer cells in the fluid.

    Jim picked up Daisy from the kennel this morning and she was beyond ecstatic to see him! She's sound asleep now in a sunbeam in our dining room LOL. We got in very late last night and Nick told us that he wants to see us tomorrow because he's going to a hockey game later today and he wants to 'get ready for it' - that means concentrating and lying down to rest up for the excitement. Bless him. We'll skype him to say hi after lunch. His routine is that he sleeps till about 11 or so and then has his shower, care and tube feed. He's ready for conversation around 2. We brought him home a Kalik (caribbean) beer T-shirt and a rum cake. He'll love that.

    I'm just cleaning the house now because we hadn't worried about dog hair before we left. We keep our house pretty spotless but it's really hard to keep on top of dog hair - it blows around like tumbleweed!

    Sending much love and hoping that all goes well for you and Jim over the next couple of days. 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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  11. #416
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    Default Dehydration Is The Culprit

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

    Welcome Home!

    Ah ... I'll bet that Daisy was thrilled to have you home. What a wonderful welcoming! Dogs do shed, that's for sure. I remember. But they bring us so much love and joy, it's worth extra vacuuming.

    Nicholas is an independent man with his own agenda and routine. I hope that he had a great time at the hockey game tonight and will not experience any pain.

    RESULTS IN!

    "No malignant cells identified."

    Acidic fluid from Jim's gut is clear of malignancy! YAY!

    THE LATEST

    Yesterday, Jim ate a big bowl of oatmeal, applesauce, blueberries, and strawberry preserves, a bowl of cashew "ice cream" with diced peaches, and half of a baked potato topped with butter, cheese, and sun dried tomatoes, and falafel on a bed of lettuce, tomato, avocado, with black olives on top.

    I fell asleep on Jon's chairbed about 10 p.m., as Jim was asleep. I woke up at midnight and prepared to go to bed, while Jim slept. At 2:00 a.m., he called me. He had to go to the toilet, because he felt diarrhea coming on. Weak and wobbly, we made it to the bathroom. And he did have diarrhea.

    I returned to the futon nest about 4 a.m. At 6:30, Jim had to go to the bathroom again. It was difficult for him to get off of the bed to stand, even using the rollator, which I held stable for him. Once he was finished in the bathroom, he couldn't get off of the toilet. We tried everything.

    I called John, and thankfully, he was at home doing his monthly paperwork, before venturing out to make two calls on stores. He was here in 5 minutes. He was able to lift Jim up off of the toilet, and using the rollator, with John by his side, Jim returned to bed.

    John told us that he and his cousin have a stash of medical equipment in their storage unit, which were used by their parents. He knew there was a standard walker in there. His cousin was going to be in our area today, so his cousin brought a walker, which belonged to his cousin's mom, and handed it over to John.

    Before John's tee time about 1:30, John arrived with the walker. He thinks it might be more stable and less cumbersome in our small bathroom for Jim to grab onto to stand up from the toilet. I will scrub it and clean it thoroughly before we try it with Jim tomorrow.

    John will visit tomorrow to help me re-frame the mattress and install the toilet seat lift, which might also help Jim stand. This is something John bought for Jim in April 2017, when he had the RA flare from Opdivo. John will also bring Jim some imodium, as recommended by Nancy to help with diarrhea.

    Meanwhile, Jim had two loose BMs on the underpad in his bed, so we could avoid getting up to go to the bathroom for today. Jim kept apologizing, and I kept telling him to stop. "Poop is my life, dear! You know that!" He is peeing in his briefs, so we have all of the toileting covered for now.

    NANCY'S VISIT

    Dr. K nixed the UA today, because it hasn't been a week since he finished Amoxicillin. So Nancy will visit next Tuesday to do a UA. She'll also flush Jim's port and draw labs, if Dr. K wants them.

    She listened to Jim's heart, and she said it sounded just fine. She didn't hear anything rattling or wheezing in his lungs. SATS: 92 off of O2 Heart Rate: 95-100 Temperature: 98.7 BP 91/65 No edema in his feet. Belly soft, waist 40" sitting down (a loss of 4" since drainage).

    Nancy determined that Jim is dehydrated, as she ticked off the symptoms. "You need salt. Drink some Gatorade, just a few sips, not the whole bottle. Drink your tea. Eat some canned soup with high sodium content." She explained that his system is reacting to the withdrawal of 7.7 liters of fluid. It's trauma, and his body was probably dehydrated, when he had all of that fluid in him. It's an enormous imbalance.

    She recommended just a small dose of Imodium rather than Pepto Bismol, which John brought to us today. So tomorrow, John will bring Imodium.

    Nancy asked Jim if he had anxiety and wanted Valium. Jim said, "The only anxiety I have is when I lose my breath from exertion. But I do my breathing exercises, and it subsides."

    I joked, "I'll take the Valium, if he doesn't want it!"

    She asked Jim if he has pain, and happily, he doesn't. The pains he was experiencing have vanished, since he climbed onto Jon's mattress. He hasn't had a T/C since Tuesday, and that was for the ambulance journey and lifting etc.

    I raised my hand, again joking, "I'll take it! I mean, if he doesn't want it, of course."

    Nancy and I chatted in the living room, while she got her iPad set up for my signature. I brought her up to date on the past week, and she just shook her head.

    Earlier, Jim told Nancy that he was worried about me working myself into the ground taking care of him, and he didn't want me to have to do all that I'm doing for him. Nancy comforted Jim, holding his hand and said, "Rose loves you Jim. She wants to take care of you. And you know that nobody could ever take better care of you than she does. You also know that Rose is strong, and she's strong for you. Like you'd be for her, if the roles were reversed. Just let her love and care for you. She knows what she is doing."

    Jim thanked her. She told him she understands how much Jim worries about me, and that she, and John, and probably everyone who knows us worries about me. But, I'm not the one, who is struggling. My day will come, as it does for us all. But, it isn't right now. I find that I'm more empowered with each day to give Jim the best care and attention.

    And, when I have a challenge, I call in the helpers, John and Nancy. I call our ambulance service. I call Dr. K.

    Jim ate half a bowl of tomato soup. And, he drank all of the Gatorade, even though Nancy told him not to do that. Then he woke up feeling nauseous.

    Next, he wants to try half of a Boomin' Berry bagel and a cup of decaf espresso.

    It's slow going, but we'll keep moving forward. He says his gut feels raw. I'm sure it does after what he's been through after having 17 lbs of fluid drained from it.

    Thank you, Donna, and all of our wonderful family here, for your love, prayers, and constant support. We love you and pray for you and your loved ones, and we give thanks for the blessing you are in our lives.

    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. #417
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    Hallelujah!
    “No malignant cells” is such good news!


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

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  15. #418
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    Wonderful news- that the cells are clear of cancer.

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  17. #419
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    Hooray for no cancer cells! Rose, I wonder if the diarrhea could also be caused by the Amoxil? And whether yogurt and probiotics could help. Certainly Amoxil caused Nick and Natalie to have loose stools whenever they got it as kids. Hopefully once everything gets back into balance, Jim will feel much better. And the walker will be such a blessing (speaking of blessings, that JOHN - he is a wonder!!!)

    I spent the day with Nick yesterday and we had a good catch up. It was lovely just hanging out - I missed him so much. He's doing great these days - no seizures or apnea - touch wood!

    Sending much from cold but sunny Canada 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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  19. #420
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    ((((((Hugs to All)))))) ~

    Thank you ANN, Virginia, and Donna ~

    Yes, this is very good news indeed. And we are grateful for everything that is working for us right now.

    This morning, John visited and began with removing the lid of Jim's toilet so he could place the elevated seat on the existing seat. I helped by finding tools to get the lid off, and John was so patient and cheerful about it.

    Meanwhile, Jim couldn't wait, and we set him up to have a BM on an underpad in bed, while John worked on the toilet seat. I have this down to a science, so there was no mess, and I was able to clean Jim as he can still raise his hips to help.

    Once John installed the seat, we helped Jim, using his rollator to walk to the toilet and sit on it, while John and I worked on the mattress.

    We deflated the mattress, and John was able to drop the side rail. Then, he pulled the mattress over to the left side, retied the anchors, and the bed was ready.

    As I brought over the clean sheet and began making the bed, John reached over from the other side to help me. "I remember this so well," he said.

    He was referring to the many times that he and I turned Jonathan and changed his sheet and linens.

    "Oh, I know. Our sweet Jon. He's happy now with Michael. And they're watching over us."

    As we placed the sheet on the mattress, John said, "It's so hard at first, and it's still hard, but as time goes by, it helps when we can remember and smile about our moments with Jon. This is special. And now, we're doing it for Jimmy. Yeah ... hmmm ..." He trailed off in thought. It's a lot to digest.

    We brought Jim back to his fresh bed, and now he is comfortable with the mattress in the right place.

    John called his wife, who was at a grocery store and asked her to pick up some Body Armor electrolyte beverages to try in lieu of Gatorade. He also asked her to pick up some Imodium, as Jim's stool is still soft.

    Yes, Donna, it could be the Amoxicillin.

    NUTRITION

    Jim started drinking his Orgain shake last night. This morning he had gas, nausea, and loose stool. I will order yogurt tomorrow, when I use Instacart.

    He still has gas. He's agreed to put in his dentures, but he hasn't been in the mood for doing it.

    Drinking tea, and he took his Lasix and Potassium. I know it seems contradictory to his current status, but he has to continue to get rid of the excess fluid, so it doesn't build up again. He went without Lasix yesterday. It's a delicate balance here. I hope we're doing the right thing.

    I just want Jim to be able to eat again, which is what he wants too more than anything. Was the drainage a mistake? Did we upset the apple cart even more? I don't know. I just know that he was miserable and needed that 17 lbs of fluid removed. He feels better, but then again, he doesn't feel very well.

    This morning, I took my first walk in a week, and I encountered one of my favorite dogs, Snow, coming home with her master from their walk. She passed by me, and she kept walking, while her master called to her to come back. As tired as I was, I could see that she was walking too far from home, so I went after her, because he master didn't. He's an elderly gentleman, but in better shape than I am.

    I walked toward Snow, calling her, and finally, she turned. "Please Snow! I need you to come back to me! Now!"

    Snow raced back to me, clung for a moment to my leg, then followed her master into the gate of their backyard.

    Tomorrow, I pick up Jim's Albuterol for breathing treatments and gas up the van. That will take me less than a half hour, so I just pray that Jim will be settled and able to manage without me. I'm sure he'll stay in bed.

    For now, that is us.

    We love you and pray for you and your loved ones, and we give thanks for the blessing you all are in our lives.

    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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