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Thread: Jim's Update

  1. #101
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    Rose, Keeping your family in my thoughts and prayers everyday, as well as all the medical professionals that your family depends on. I hope everything is going smoothly with appointments and such. Your strength and positive attitude are very inspiring. Feeling thankful for all the good things in my life including my online family here at BT.
    Mary Grace

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  3. #102
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    :) I hope the doctor and nurse showed up to do Jon's G tube and catheter. Y'all continue to be in my prayers. Jeanie :)

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  5. #103
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Jim continues to be well and fairly active, maintaining an excellent weight. He remains on a low dose of Prednisone to keep the RA at bay. Every day is a blessing.

    G TUBE

    Screen Shot 2017-06-03 at 2.36.35 PM.jpg

    Jonís GI doc visited on Wednesday to remove and replace Jonís G Tube. All went very well. Our GI is the sweetest person, with the kindest heart. Jon loves and trusts him, which makes the procedure easier. There was nothing left of the ďmushroom,Ē which holds the tube in place in the gut, so our doc said, ďItís good we got this done today."

    He asked Jim about his cancer journey and offered his prayers. He remarked that Jim looks very well given his diagnosis.

    CATHETER, TRACHE & WOUND CARE

    Jonís nurse visited on Thursday (instead of Tuesday), but the wound care nurse didnít join us. Wires got crossed somewhere. Nonetheless, John was here to turn Jon, and Jonís nurse evaluated Jonís wounds. She took photos to share with the wound care nurse, and the lead wound care nurse (who is a man, by the way), who treated Jonís buttock wound in 2009 for 9 months. She recommended using anti fungal powder on the wounds and changing the Optifoam dressings every time we turn Jon, which is about 3 times a week, thanks to John.

    Unfortunately for us, but lucky for John, he and his extended family and friends are going on vacation next week. They leave Monday and return Friday. John will be here tomorrow to turn Jon, then will visit on Friday when he gets back from his vacation. So, Jim and I may have to turn Jon on our own mid-week. I may have to take a steroid to do that!

    Jonís nurse changed his trache, which has benefited Jonís SATS. She also changed his catheter. He graduated to a larger size cath. It didnít stop the leaking. So, Iím not sure where we go from here, unless we use a garden hose. She suggested an acidic irrigation of his cath 1-2 times a day. The solution is vinegar and water. I donít know how this will help, unless it might control/reduce bladder spasms. Jon shows no pain or discomfort, so itís really difficult to discern if he is having spasms.

    For the past 2 days, Jon has been battling insomnia. Staying awake for nearly 20 hours, really trying to fall asleep. So, now his days and nights are mixed up. Again. Well, we had a relatively normal sleep pattern for a couple of weeks, and at least Jon got all of his medical needs met.

    JIM'S NEXT APPOINTMENT

    Since John will be out of town, Jonís nurse (or her husband) will transport Jim to his appt. with Dr. P on Tuesday. Dr. P will decide on giving Jim another Navelbine infusion that day, after she sees his blood work results. If she sends him to the infusion center, heíll need a ride home, which is why he isnít driving himself. I think Dr. P will be stunned when she sees him and hugs him, because Jim has gained 10-12 pounds, since his last appt. with Dr. P.


    ME?

    Well, Iím tuckered out. Or knackered, as Jim says. I started deep cleaning our home inside and out on the Memorial Day weekend and didnít stop until yesterday. All of the chores, which I havenít had time or energy to do for months. I managed to keep up with the basics, but the details were left undone.

    Then, the stress of Jonís medical procedures, worry over those wounds, his insomnia (worry about seizures), and the stress related to Michaelís 14th Angelversary.

    Yesterday, I went to the grocery, came home with a ton of stuff (because I donít want to go back for awhile), carried in the heavy bags and put the groceries away. Jim tried to help, but he is getting dizzy when he bends over sometimes, so I made him sit down.

    On Thursday, I asked John if we could go with him on his vacation. He responded, ďI so wish you could. If anybody deserves a vacation, itís you guys.Ē

    I asked him to text us pictures so we can vacate vicariously with him and his family. Weíre very close to the family, as his parents lived 2 doors from us for about 20 years.





    Thank you all so very much for your continuing prayers, love, and support. You are a blessing to us, and we give thanks for you and pray for you and your loved ones.



    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  7. #104
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    So relieved and thrilled Jim continues to do well! My prayers that he continues to do well. I'm sorry he gets dizzy though. I hope the dizziness stops soon. I know how unpleasant that can be from watching it happen to others... I'm glad Jon's needs and the chores have been taken care of. Good idea stocking up. I tried to tell someone I know to do that so they wouldn't end up in the store multiple times a week but they screamed at me…some people LOL. Take care of yourself.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  9. #105
    Distinguished Community Member agate's Avatar
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    Hope that this week isn't putting too much of a strain on you, Rose. Maybe you can enlist someone's help with the lifting?

    I think I'd be tempted to grab a neighbor, any neighbor, but that's probably totally impractical.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #106
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to ALL)))))) ~

    funnylegs4 ~

    I'm sorry that someone screamed at you for giving a good, helpful suggestion. For me, it's easier to get it all at once, than to have to go to the store frequently. We also have a lot of stuff going on here, which makes it difficult for me to make several trips to the store. Plus, I'm ... you know ... tired.

    agate ~

    Thank you for my laugh for the day. Our neighbors are far too old to help us with Jon, and most of them have their noses so high up in the air that they wouldn't deign to assist us in anyway at all.

    Jon is 6'1", weighs about 200 lbs with so much water weight, has a rod and pins in his right hip, and has no hip on his left side. He has to be handled just right to prevent pain when he's turned. That requires a strong, fairly young (Jon's age) man. Aka ~ John. He texted us today a photo of his wife and him overlooking the ocean. They, and the rest of the family, as well as their friends, all deserve this vacation, as they are hard working, loving, giving, generous, caring people. They care for their aging and ill parents; their aging and ill pets; their blossoming children. And they all work hard at their jobs.

    Jim and I will figure out a way to turn Jon, and treat his wounds. We know we have to do this, so we will.

    But first!

    Jim has to recover from today's Navelbine infusion. He had an adverse reaction for the first time ~ it was his 5th infusion. He was fine, until it was finished, then he had spasmodic pain in his lower back, uncontrolled shaking, and extreme cold throughout his body.

    Jim's infusion nurse gave him blankets, took his vitals, which were fine, and called Dr. P. She ordered steroids, Pepcid-AC, and Claritin.

    But his infusion nurse thinks the problem was coagulation in the line, which can be remedied with extra saline to thin the chemo drug.

    Thankfully, Jim recovered and is fine now. But this was traumatic for him, since he had no idea what was happening to him. He said he envisioned being on a gurney taken to ICU.

    Jim's vitals are excellent. He's gained weight, which pleased Dr. P, who said, "You look great!" His blood work shows improvement in all of the most important areas, and stability in all other areas. Jim is winning!

    Thank you all for your love, prayers, support, and for continuing with us on our journey.

    Love & Light,




    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  13. #107
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    It's great to hear this, Rose.

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

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  15. #108
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to ALL)))))) ~

    funnylegs4 ~

    I'm sorry that someone screamed at you for giving a good, helpful suggestion. For me, it's easier to get it all at once, than to have to go to the store frequently. We also have a lot of stuff going on here, which makes it difficult for me to make several trips to the store. Plus, I'm ... you know ... tired.

    agate ~

    Thank you for my laugh for the day. Our neighbors are far too old to help us with Jon, and most of them have their noses so high up in the air that they wouldn't deign to assist us in anyway at all.

    Jon is 6'1", weighs about 200 lbs with so much water weight, has a rod and pins in his right hip, and has no hip on his left side. He has to be handled just right to prevent pain when he's turned. That requires a strong, fairly young (Jon's age) man. Aka ~ John. He texted us today a photo of his wife and him overlooking the ocean. They, and the rest of the family, as well as their friends, all deserve this vacation, as they are hard working, loving, giving, generous, caring people. They care for their aging and ill parents; their aging and ill pets; their blossoming children. And they all work hard at their jobs.

    Jim and I will figure out a way to turn Jon, and treat his wounds. We know we have to do this, so we will.

    But first!

    Jim has to recover from today's Navelbine infusion. He had an adverse reaction for the first time ~ it was his 5th infusion. He was fine, until it was finished, then he had spasmodic pain in his lower back, uncontrolled shaking, and extreme cold throughout his body.

    Jim's infusion nurse gave him blankets, took his vitals, which were fine, and called Dr. P. She ordered steroids, Pepcid-AC, and Claritin.

    But his infusion nurse thinks the problem was coagulation in the line, which can be remedied with extra saline to thin the chemo drug.

    Thankfully, Jim recovered and is fine now. But this was traumatic for him, since he had no idea what was happening to him. He said he envisioned being on a gurney taken to ICU.

    Jim's vitals are excellent. He's gained weight, which pleased Dr. P, who said, "You look great!" His blood work shows improvement in all of the most important areas, and stability in all other areas. Jim is winning!

    Thank you all for your love, prayers, support, and for continuing with us on our journey.

    Love & Light,




    Rose
    Hi Rose,
    So sorry Jim had a reaction! It doesn't sound like an allergic reaction, it sounds like he just had a moment where his nervous system got alarmed by something that was not actually a problem. Kevin Sorbo mentioned having a reaction like that after having some kind of medication in his book "True Strength" . I'm so glad Jim is okay. So sorry he had to get startled like that! I'm glad the reaction was still worth it given his continued improvement. Prayers for the next infusion to be smooth and easy!

    Yes that's exactly what I told this person and they mistakenly thought I was accusing them of buying too much food. I was like "HUH??? I'm trying to save you trips! It's none of my business what or how much you buy. I'm just saying buy it in one trip".

    Having a slight film production issue but I hope it gets fixed ASAP.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  17. #109
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up

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

    Thank you for your prayers, love and support!

    Just to clarify ~ Jim's adverse reaction to the Navelbine was likely caused by coagulation in the line as it was administered. This chemo is infused with a syringe over a 10 minute period, which means that the saline drip from the IV is not working at the same time as the infusion. When chemo is administered via IV, saline is "pony-ed" onto it.

    So, the resolution for this is to ensure saline is given with the infusion.

    We weren't able to turn Jon yesterday, because he slept odd hours, which he's been doing for 4 days. I don't know whether we will try this evening, as John will be home tomorrow and will hopefully visit to turn Jon. John texted 2 more vacation photos today, and he, his wife and daughter are having a wonderful vacation. We are so happy for them and can't wait to hear the details.

    Jim proudly flexes his biceps to convince me that he's up to the task. When I first met Jim 25 years ago, those biceps were enormous! He was incredibly muscular after nearly 30 years as a scaffolder.

    So, of course, it was difficult to watch Jim lose so much weight and muscle tone over the past couple of years. Now, he's beefed up a bit more, and he looks more like himself.

    Jim cut his steroid dose in half, per Dr. P's instruction today. So far, he feels fine. No pain. But he did have a steroid infusion after his adverse reaction, so that may account for him not feeling any different.

    Nonetheless, he's healthy and happy, and he's here.

    And, that, my friends, is everything.

    Thank you again for your love, prayers and support. Please know that we pray for all of you and your loved ones ~

    Love & Light,



    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  19. #110
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    I am glad that John was able to get away with his family for a week, but I am happy he is coming home tomorrow. I am always concerned for you, Jim and Jon.

    I saw a picture of a bed that was designed to help turn invalid people and accidentally I hit a button on my computer and lost it. I tried and tried to get it back because when I saw it I instantly thought of you. But reading your above description of how Jon has to be turned it would not work so I will not try to find it anymore.

    Blessings for all of you,
    Last edited by Virginia; 06-08-2017 at 06:53 PM.
    Virginia

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