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Thread: CN Central: AUGUST UPDATES!

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    Cool CN Central: AUGUST UPDATES!


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

    Is it hot in here, or is it just me?



    Still no word on Jon's formula. We have a month's supply, thanks to the generosity of the nursing agency's pharmacy. It's in the hands of the Medical Director of Medi-Cal, who is physician. How any doctor could deny nutrition to a patient, after being on that nutrition for 7 years, is beyond my comprehension. "First do no harm." I hope that means something to this doctor.

    Generally, Jon is well now, and we just pray it continues.

    Please check in with your updates!

    Your chaise is reserved



    And your smoothies are waiting



    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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    Still no word on Jon's formula. We have a month's supply, thanks to the generosity of the nursing agency's pharmacy. It's in the hands of the Medical Director of Medi-Cal, who is physician. How any doctor could deny nutrition to a patient, after being on that nutrition for 7 years, is beyond my comprehension. "First do no harm." I hope that means something to this doctor.
    Not much to report yet but in regards to Jon's formula Rose, I read a bunch of articles on disability rights sites back in like 2012 that nutrition was stupidly re categorized as "life support" rather than a basic need so a doc can refuse to provide it. To the system Jon is disposable. I would give Jon a life supply if I had the power to do so. Prayers this is resolved IMMEDIATELY.
    Last edited by funnylegs4; 08-04-2016 at 05:42 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((funnylegs4)))))) ~

    Thank you so much for your support and prayers!

    G Tube feeding is simply a different way of providing nutrition. It is no more life support than the sandwich, burger and fries, or pizza we may consume. If we were denied access to food for a long period, whether we can chew and swallow, or we can't, we would die. It's just that simple.

    Jon's tube feeding is a medical issue to those in charge of determining whether he receives his formula. In reality, Jon's G Tube feeding is a human rights issue. Just because he can't chew or swallow, should he be denied sustenance, when he can receive it via his G Tube?

    We still await the decision of the Medical Director, and I'm beginning to line my ducks up in a row.

    This is a stress we don't need, but we should all be aware that these denials for care in even the most dire circumstances are occurring and may affect each of us eventually.

    I'm sure that Jon isn't the only one facing these horrible odds.

    We all need to keep track of how our insurance is responding to the needs of those within its purview. We never know when we could become the next victim.

    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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    This is all just so bizarre to me! Excuse me if I'm ignorant on the subject BUT... As Jon's caregiver if you were to withhold his nutrition whether it's tube feeding, water,or basic food to survive wouldn't someone (government agency) step in and force you to keep him alive with the needed nutrition???? How can these same people deny his nutrition to survive? Isn't this a way of them saying let him die??? Isn't that illegal?? Wouldn't this person denying the nutrition be legally liable for his life? I'm so confused! This is so obvious and so so wrong! Sorry so angry...
    Mary Grace

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    ((((((Mary Grace)))))) ~

    You are definitely not ignorant! You are absolutely correct!

    If we stopped feeding Jon, as his nurse noticed his decline and withering, she would have to report us to the authorities (Child Protective Services, maybe the police). I'm sure that there would be a list of violations, such as neglect, endangerment, perhaps even attempted homicide.
    Jon would be removed from our home, likely placed in a long term acute care facility, and we'd probably be in jail. If Jon died as a result of our withholding his nutrition, we'd probably be charged with voluntary manslaughter or worse.

    Medi-Cal is arguing that Jon's doctor didn't provide information to them regarding the route of administration (G Tube), whether he has a diagnosis of malabsorption, and whether he has been tried on other types of food, including oral intake. Now, they've been paying for Jon's formula for SEVEN YEARS, so they have all of that information and much more on Jon. This is System Malarkey.

    Medi-Cal would likely find a legal way to wiggle out of liability, but I would sue them, if Jon died from starvation. They might maintain that his nutrition isn't their problem, but his (and ours). They might argue that we should be responsible for paying for his nutrition (we aren't; he's an adult, and we aren't conservators or guardians), or they might claim that his physician(s) should have identified an alternative for his nutrition. I don't know, but I'm sure that they have mega lawyers, who would turn it all around.

    We have a fantastic lawyer, and he'd be more than efficient at beating down their arguments. But we're dealing with a government agency, with immense power. It would be a protracted fight.

    Jon's doc is outraged, referring to the discontinuing of Jon's food as an "injustice," and agreeing to provide testimony on Jon's behalf, if I have to file for a Fair Hearing. I am certain I can get the same commitment from Jon's GI doc, who changes Jon's GTube annually in our home. Jon's current and former nurse are also enraged and ready to testify. Our friends, and everyone we know, feel the same way you and we do ~ nothing justifies cutting off Jon's food supply. Nothing.

    There are many other ways that this could have been handled, if indeed some violation of Medi-Cal's rules occurred. A "Warning" advising Jon's doc and Jon that they needed this information to renew their contract with the nursing service pharmacy to keep providing Jon's formula. A 30 day grace period to meet their requirements. An alternative formula (although we would fight that). But, that isn't what happened. They just stopped payment on his formula.

    In all of my communications, I am referring to this action by Medi-Cal as "issuing a death sentence to Jon."

    I found a place on line where we could purchase bags of Jon's formula (but not the spike sets, which connect to his G Tube, which is weird), and I calculated that it would cost us close to $2,000/month to pay for Jon's formula. If it comes to that, I'm praying that the nursing agency pharmacy will work with us to bring down the total. Regardless, we will not let him starve. We would refinance our home, if necessary. But he will not starve to death.

    And you can bet that I would blitz the media with our story. We've done it before successfully.

    Jon's nurse drew Jon's blood on Wednesday. Three labs turned her away, refusing to test his blood, because he has Medi-Cal. She finally located a lab willing to test his blood.

    This is what we're up against. It runs deep in this agency. Years ago, Medi-Cal refused to pay for his air mattress, so we purchased one for him (and 4 others before we got the one he now uses). Medi-Cal refused to buy him a new bed in 2014, so we bought it for him. In 2011, after he'd been in ICU for 45 days, they refused to pay for his pulse oximeter. We've purchased two for him since then.

    So, it's been an ongoing battle for many years. But denying him nutrition is the most devastating denial of all.

    While Jim and Jon watched a movie this morning, I composed an email to Jon's Regional Center case worker, who serves as an advocate for Jon. It took me two hours, with a couple of breaks, but I think I now have the boilerplate to use to contact various advocacy agencies to assist us in this case. Even if the Medi-Cal Medical Director reinstates Jon's formula, these agencies need to know the dire straights of Medi-Cal patients, being refused desperately needed supplies and services.

    Thank you for your support, Mary Grace. I hope we don't have a long road ahead of us, but if we do, I'm polishing my battle armor and sharpening my sword.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 08-06-2016 at 07:12 PM.
    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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    Seriously Rose, don't the powers that be, ever get tired of messing with our boys? Withholding Jon's formula is tantamont to murder by the State. That just irritates the heck out of me. You need a letter of support and protest written, just let me know. We are behind you 100%. Jon has rights and deserves to be heard.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    ((((((Tamie)))))) ~

    Thank you so much for your support and offer to provide testimony.

    In the 46 years that I've been fighting for my boys' rights, I can say that the System never gets tired of messing with our boys and their peers. But just stopping the provision of Jon's food/formula is by far the most egregious act we've ever encountered.

    What is mind boggling is that Medi-Cal has been paying for his formula for 7 years. What possible justification is there for just stopping it? Their 3 bogus reasons? Bogus, because they have had all 3 of those reasons documented for 7 years. Nothing has changed in those 7 years. Jon still has a G Tube and will for the rest of his life. He still has malabsorption and slow motility ~ no miracle cure there. And he still requires the continuity of the Vivonex, the only formula he's ever used. (Oh, and his teeth didn't magically reappear either!)

    Here's another ridiculous example: Jon needs a very small plastic adapter to connect his trache mask to the O2 tubing, when he needs O2. I begged Apria for an adapter last year, and they sent ONE adapter. It broke the last time Jon was on O2. I called Apria on July 14 and requested more of these adapters. I was asked "How many do you want?" And I requested a dozen. The Apria rep said, "I don't know whether Medi-Cal will pay for that many." We still don't have any adapters, so I have to call Apria again this week, because I can't find any on the internet.

    I did find trache masks, at the whopping cost of $2/mask. Now, how much does that little plastic adapter cost? A quarter?

    But, if we don't have that stupid adapter, we have to use a nasal cannula, which Jon pulls off constantly.

    He is a trache patient, for crying out loud!

    So, yeah, the crap they put us through is never-ending. And the stress this creates is off the rails.

    Okay, I guess I'm done ranting for now!

    Please keep us updated on Tyler ~ continuing to send healing 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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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    Thank you so much for your support and prayers!

    G Tube feeding is simply a different way of providing nutrition. It is no more life support than the sandwich, burger and fries, or pizza we may consume. If we were denied access to food for a long period, whether we can chew and swallow, or we can't, we would die. It's just that simple.

    Jon's tube feeding is a medical issue to those in charge of determining whether he receives his formula. In reality, Jon's G Tube feeding is a human rights issue. Just because he can't chew or swallow, should he be denied sustenance, when he can receive it via his G Tube?

    We still await the decision of the Medical Director, and I'm beginning to line my ducks up in a row.

    This is a stress we don't need, but we should all be aware that these denials for care in even the most dire circumstances are occurring and may affect each of us eventually.

    I'm sure that Jon isn't the only one facing these horrible odds.

    We all need to keep track of how our insurance is responding to the needs of those within its purview. We never know when we could become the next victim.

    Love & Light,

    Rose
    I completely agree Rose! Food and water are just food and water. It does not matter how you get it and starvation is one of the most cruel and painful deaths a human or any animal can experience which is exactly why I think it is so awful that people in the medical field are doing this to you! It is absolutely digesting and immoral! You are exactly right about child protective services! Yet somehow the medical system gets away with it. It's like saying disabled people are less than children. I personally think assisted suicide is of a similar mentality to what you are experiencing. All of it is a form of ableism,complete injustice and promoting death instead of life. I would vouch for you too!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((funnylegs4)))))) ~

    Thank you so much for your support! I truly appreciate your offer to vouch for our family and for Jon!

    I often wonder whether Medi-Cal employees see Jon's charges and say, "When is this guy going to die? I mean, he has so many things wrong with him! And he just keeps going, and we have to keep paying!" And then, "Hey! Let's cut off his food supply! That ought to do it!"

    That is cynical and sinister, and likely not true. But, when you're in the midst of a crisis like this, you feel like it is true.

    I called Apria today to track down the trache adapters ~ turns out they were supposed to be shipped on 7/19 (I requested them on 7/14). A very helpful and nice person worked it all out, and they were sent today and should be here tomorrow. It only took me 25 minutes and being transferred to 3 different people to get it resolved.

    Good timing too, since Jon slept for 11 hours, woke up with low SATS, high heart rate and temp today.

    I sent my detailed email about Jon's Vivonex to his Reg. Ctr. CM, and yesterday I found out that Jon has a different CM. This will be his 4th Reg. Ctr. CM in 8 years. She emailed me a referral to a Medi-Cal/Rg. Ctr. "liaison," who I have called numerous times, and who never returns my calls and has never done a thing to help Jon.

    I found out today that our Area Board for DD is a shell of what it once was 20-30 years ago, and the woman, who replied to my detailed email, obviously hadn't read it thoroughly. She asked whether Jon is Reg. Ctr consumer. Well, a) every person with DD in our County is a Reg. Ctr. consumer; b) I specified that Jon has been a Reg. Ctr consumer since 1976 in my email. I'm sure that I know more about The System than she does.

    She also asked me whether I was Jon's Conservator, and whether Jon can sign a consent form.

    With my hand over hand assistance, Jon can sign a consent form. And he's always willing to sign any form, because he knows I'm fighting for him. He is a very intelligent man, with limited expressive verbal communication. But he knows what is going on.

    A dramatic moment from the past:

    In 1988, during our Fair Hearing to obtain the maximum monthly amount of care hours through IHSS, Jon was taken out of the conference room in his wheelchair, because the room was crowded (we had lots of witnesses to testify on behalf of Jon and Michael). I objected, and I argued that this hearing was about Jon, and he of all people was most entitled to be in the room.

    A Social Service supervisor piped up, "The room is too crowded for Jon to be in here."

    "Then why don't you leave, since this isn't about you? This is about Jon and Michael. And, I can't leave my son unsupervised in the hallway, while you sit here smugly denying his rights to IHSS services."

    Suddenly, Jon came roaring into the room, wheeling his chair with all of his might, and shouting: "FAIR HEARING! FAIR HEARING!"

    He was awesome! And he still is and always will be!

    It's disheartening, because I'm on my own with this issue now. I just keep praying that the Chief Medical Director will recognize the error of discontinuing Jon's Vivonex and authorize continuation.

    I did what I could to alert the two agencies most directly involved with Medi-Cal patients with DD, and their response has been tepid. So, now, I'm solely concentrating on Jon. I am only one voice, and I can only do so much.

    Thank you again, funnylegs 4, for your support and encouragement.

    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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    Well I finally have something to report. Remember I told you my friend had a coworker who had a stroke? The coworker is doing better and has been able to increase her physical activity but if she overexerts herself she becomes ill in episodes similar to the ones my teacher had but my friend and I have a little plan to lift this coworkers spirits! I'll try to post about that after it happens if I can. Please pray her "episodes" improve and eventually stop completely! Also pray for cooler weather here as we are all miserable in 100s here!

    Rose, you are very welcome! The good news is that Jon still does have a voice. His own in the way he signs forms,his words that he can say and most IMPORTANTLY YOU! Keep fighting for his beautiful,valuable life! Never give up! I don't think many sane regular people out there wish for Jon's death but you must be careful with places that deal with a lot of money and a lot of paperwork because their bottom line can mean they will be driven to due unethical things in rare instances.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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