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Thread: Update on B

  1. #31
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    Oh Rose, I feel your frustration - it's jumping out of my computer! I guess you don't have any colleges in your town that teach podiatry eh? What about oral anti-biotics? There's nothing more that you could do for his toe other than what you are already doing. And the darned bed, I feel your pain because I sure know what THAT is like!!!! I don't know a solution - I just pulled Nick up in bed constantly his whole life. I will pray for a new bed!!!!!! Poor sweet Jon, I wish he was feeling better. You are right, there is no knowing what caused his symptoms, it could be any of the changes that mentioned, but WHY??? It doesn't make any sense. Perhaps he will feel better just as suddenly as he began to feel unwell. One can only hope and I will!!! oxox
    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


  2. #32
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna))))))

    Thank you, as always.

    I'm starting to guess that it could be Jon's meds causing this fluid retention, as Dilantin is noted for that, and we did increase Jon's Dilantin after his seizures in March. He is clinically showing signs of overmedication ~ the slits for eyes, the weariness.

    Of course, it could also be his hypothyroid.

    Potential solution to his bed positioning: elevate his legs more. Well, this helps a little. However, it also causes the fluid to move up his feet and legs to his torso. This then results in a lower urine output and more oral secretions. Elevated legs also fights the gravity of the catheter's output.

    I don't think that we have a podiatry school in the vicinity. I'd never thought of that ~ great idea! It just irritates me so much that Medicaid will not pay for a home visit by a podiatrist. People, who are homebound, should have this service. Think of all of the folks, who can't take care of their feet and need a podiatrist. People, for whom a doctor visit is a true chore and filled with pain and discomfort.

    If the System wants us to rely upon home health care, they better start paying doctors to visit people in their homes! It's only logical, for crying out loud!

    I begin my quest for a podiatrist next week. Needle ~ Haystack.

    Meanwhile, the bathing and Bactroban are keeping the infection at bay.

    Keeping you all in my prayers ~

    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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