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Thread: Jim's Journey

  1. #411
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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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!


    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!"


    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.


    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.


    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,

    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and 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!

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  7. #414
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((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,

    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and 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:

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