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Thread: CN Central: JULY UPDATES!

  1. #11
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    I hope the med change continues to be positive. Praying that the fluid retention is resolving. I hope the catheter change goes well tomorrow. It's crazy to have all that red tape for lifetime things that are needed... So many phone calls and so much stress. Keep us posted...
    Kathleen and I were very lucky to go to a Josh Groban concert on Monday night. It was fabulous! Kathleen had a huge smile on her face the whole night. I was pleasantly surprised at how good Sarah Mclaughlin was. She was with him and she too has an amazing voice. Katheen is a huge fan of Josh Groban and has watched a recorded PBS special he did for several months and has been talking about going to the concert forever. I feel so lucky to have been able to take her and make one more dream come true... We got her hot tub delivered and hopefully will get it set up this weekend. Tuesday she has an appointment with the urologist to talk about the blood in her urine. It's not all the time but more often than it used to be.
    My oldest daughter is now officially a homeowner! Her and I went over to her house and cleaned. Her furniure gets delivered tomorrow. I'm so very proud of her!
    Mary Grace

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mary Grace)))))) ~

    How great that you and Kathleen were able to see Josh Groban! He does have a terrific voice, as does Sarah Mclaughlin. Hope the hot tub installation goes well. I'm sure Kathleen will enjoy it. Congratulations to your daughter on her new home. Best investment anyone can make. I hope that the urologist has an answer and solution for the bleeding. Please keep us updated!

    Jon had his cath changed today. I insisted that it wasn't in far enough, but Jim insisted that it was fine. An hour after Jon's nurse left, Jon had peed over his cath, and we had to change his bed and bathe him. Then, we deflated the cath balloon and guided in the cath, re-inflated the balloon and are hoping for the best.

    Bowels are sluggish, but after 2 doses of MOM, he is beginning to produce. Tonight his heart rate is elevated, and his temp is 100.2. Carrying a lot of fluid, bowel, and gas.

    Jon's Medi-Cal provider has denied to authorize payment for Jon's feeding formula, Vivonex. After 7 years, they are questioning the method of delivery for the formula (G Tube), his diagnosis of dysphasia (difficulty swallowing), and whether he actually needs to be fed a formula. It is all bogus, but this is what is happening to our Medi-Cal program. Denial, denial, denial.

    By refusing to provide his food, they have essentially issued a death sentence for Jon. Without nutrition, he will starve and die.

    Thankfully, his home health agency won't allow this, and today Jon's 9 cases of formula were delivered to our door. I spoke to an advocate liaison in their pharmacy, who told me that she has been fighting Medi-Cal for weeks on Jon's behalf, and that his case, which was closed by Medi-Cal, has been reopened, and the issue is now before Medi-Cal's medical director. She's fighting for Jon, and has told me to hold off on filing for a Fair Hearing against the state, until she gets the Medical Director's decision.

    If I have to file for a Fair Hearing, I am going to contact our major newspapers and local TV stations. I want the world to know that our county's managed care Medi-Cal program denied my son his nutrition, after 7 years of paying for it, for bogus reasons, and would let him die a painful death from starvation. This is horrendous, despicable, and unforgivable.

    I pray that it doesn't come to that, because, while I have the experience, tools, and resources to prevail in a Fair Hearing, I do not have the energy, the strength, or the time to devote to months of fighting this battle.

    I've spent nearly a half century fighting these battles, and I'm weary, angry and fed up!

    A stressful week ... I'm sure there are more ahead, regardless of the outcome of Jon's formula fiasco. So I'm trying to take it one day at a time.

    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.

  3. #13
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Mary Grace)))))) ~

    How great that you and Kathleen were able to see Josh Groban! He does have a terrific voice, as does Sarah Mclaughlin. Hope the hot tub installation goes well. I'm sure Kathleen will enjoy it. Congratulations to your daughter on her new home. Best investment anyone can make. I hope that the urologist has an answer and solution for the bleeding. Please keep us updated!

    Jon had his cath changed today. I insisted that it wasn't in far enough, but Jim insisted that it was fine. An hour after Jon's nurse left, Jon had peed over his cath, and we had to change his bed and bathe him. Then, we deflated the cath balloon and guided in the cath, re-inflated the balloon and are hoping for the best.

    Bowels are sluggish, but after 2 doses of MOM, he is beginning to produce. Tonight his heart rate is elevated, and his temp is 100.2. Carrying a lot of fluid, bowel, and gas.

    Jon's Medi-Cal provider has denied to authorize payment for Jon's feeding formula, Vivonex. After 7 years, they are questioning the method of delivery for the formula (G Tube), his diagnosis of dysphasia (difficulty swallowing), and whether he actually needs to be fed a formula. It is all bogus, but this is what is happening to our Medi-Cal program. Denial, denial, denial.

    By refusing to provide his food, they have essentially issued a death sentence for Jon. Without nutrition, he will starve and die.

    Thankfully, his home health agency won't allow this, and today Jon's 9 cases of formula were delivered to our door. I spoke to an advocate liaison in their pharmacy, who told me that she has been fighting Medi-Cal for weeks on Jon's behalf, and that his case, which was closed by Medi-Cal, has been reopened, and the issue is now before Medi-Cal's medical director. She's fighting for Jon, and has told me to hold off on filing for a Fair Hearing against the state, until she gets the Medical Director's decision.

    If I have to file for a Fair Hearing, I am going to contact our major newspapers and local TV stations. I want the world to know that our county's managed care Medi-Cal program denied my son his nutrition, after 7 years of paying for it, for bogus reasons, and would let him die a painful death from starvation. This is horrendous, despicable, and unforgivable.

    I pray that it doesn't come to that, because, while I have the experience, tools, and resources to prevail in a Fair Hearing, I do not have the energy, the strength, or the time to devote to months of fighting this battle.

    I've spent nearly a half century fighting these battles, and I'm weary, angry and fed up!

    A stressful week ... I'm sure there are more ahead, regardless of the outcome of Jon's formula fiasco. So I'm trying to take it one day at a time.

    Love & Light,

    Rose
    Rose, I'm so sorry you have another battle possibility looming. I had a small taste of what you go through with Jon last week when I tagged along for a family member's appointment and the docs managed to totally screw up the test and paperwork and their medicare doesn't even cover anything we had to do. The system is a complete mess and disabled people clearly pay the price! Grr!

    And then you have horrors like this https://www.theguardian.com/world/20...isabled-people where people yet again are saying our lives have no meaning.

    Mary Grace, sounds wonderful!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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