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Thread: Feeding Frenzy

  1. #1
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    Exclamation Feeding Frenzy

    ((((((HUGS to All)))))) ~

    Most of you are probably not old enough to remember this ancient TV commercial:


    N E S T L E S

    Nestle's makes the very best

    CHOC LATE!



    These days, Nestle's makes more than chocolate. They manufacture enteral feeding formulas, including Vivonex, which is Jon's G-Tube formula.

    The pharmacy with our nursing agency, which has been supplying Jon with his Vivonex for 5 years, offered us a new option. Rather than cases of 24 "juice" box sized containers of formula, Jon could receive one 1500 ml/calorie bag to hang on the IV pole per 24 hour period. 6 boxes versus 1 bag.

    For us as care providers, that means hanging one bag, as opposed to taking down the feeding bag, filling it with a carton of formula and rehanging it several times a day.

    Additionally, the cases containing these "juice" boxes are really difficult to open. Three sides need to be pulled up, and when you have arthritic hands, that is painful. The 1500 ml bags are supposed to be delivered in an easy open package.

    The bags are heavy, and I find them a bit of a challenge to hoist up to the 18" mark of the IV pole. But I told myself that this would firm up my underarms, so I'm going with it. And that's better than popping open the veins on my hands trying to unglue the sides of the case with the "juice" boxes. (And yes, I've done that a couple of times. Then I worry about a blood clot traveling to my lungs, heart or brain. That's not a good thing to be worrying about.)

    So, Jon was sent four 1500 ml bags of Vivonex as a trial run, with more to come if possible.

    "If possible?" you ask.

    It seems that Nestle's enteral feeding factory has had some kind of mysterious disaster.

    Our trusted pharmacy aide told me that a rep from Nestle's contacted her with some vague explanation that something had happened to the factory, causing a shut down for major repairs/rectification. She has no written document from Nestle's about this crisis, affecting people, whose LIVES literally depend upon their enteral feeding formulas. A few Google searches rendered me no information. No press releases on Nestle's website. Nothing.

    Jon's pharmacy is scrounging all over the country to find spare supplies of Vivonex to feed him, until the factory returns to production.

    Jon is down to his last suctioning canister, and we don't have the respiratory supplier sorted out yet. That crisis has been going on for a month now. I'm calling the Medi-Cal liaison every day, leaving messages. Each day, my message is more terse and desperate.

    Because, evidently, we don't have enough stress ~ now, his food supply is in jeopardy.

    I want to know what happened to Nestle's factory. Was it contamination of some sort? Should I be fearing what is going into Jon, which we laughingly refer to as food, more than I already am?

    What do I do now?

    Well, I suppose that I could call Nestle's and keep probing until I get some answers. Or I don't get answers.

    As much as I hate Vivonex, and all enteral feeding formulas, Jon is being sustained on it, because his digestive system cannot tolerate a blenderized diet. We tried it. It didn't work, and I have the idle VitaMix to prove it.

    Changing Jon to a different formula could be tricky, since he has issues with tolerance, bowels, and fluid retention. We know what we have now. A new formula might be better. But it might be worse.

    Where is the accountability of the corporations, who profit from assisting persons, who are seriously ill or have specific medical needs, which must be met, to keep living? How is it that these suppliers can just disregard with impunity their consumers/patients, who need these supplies to survive? How is it that a factory producing enteral feeding formulas can have a "disaster," and no one knows about it?

    What country and what century are we living in?

    More mire for me to slosh through, another maze for me to scurry around.

    Jon has two weeks of nutrition, which was delivered tonight to our doorstep. After that, who knows?

    We are on the edges of our seats, terrified and appalled that it has come to this. But fear won't paralyze us, because we will pursue answers and appropriate resolutions for Jon.

    Maybe I should start cranking out letters to assorted power holders and just outline the basics:

    If Jon doesn't have a trache, he dies. If Jon doesn't have suctioning, he dies. If Jon doesn't have his food, he dies. I often wonder if that isn't their point, since it would save them a ton of money. It doesn't matter. I won't let that happen.

    Armor on. Ready to battle. Determined to prevail.

    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.

  2. #2
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    Hmmmm, this is a real mystery! I haven't seen anything online about Nestle having factory problems. Very strange indeed. I wonder how to find out, I'll have to give this some thought. Who do I know who might know?? Putting on my thinking cap.
    xoxo
    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


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    Distinguished Community Member andromeda31's Avatar
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    OMG, that is scary! I tried looking to see if I could find anything about the factory problems and could not find anything...one would think there would be some kind of news article that would come up. Wonder why it is being kept so hush. I remember when the Eggo waffle factory had problems, they actually taped a sign to the freezer case where they normally are (at the grocery store I go to) talking about the factory having problems and there was a shortage of Eggo's. Seriously, totally non-essential waffles! It lasted for a really long time. I even still was able to find a bunch of articles about it! http://money.cnn.com/2009/11/18/news...tage/index.htm

    That is scary that there is nothing in the news about something way more important...not like you can switch a formula as easy as a breakfast food. I pray that you are able to secure a stockpile for Jon until their factories get going again....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Nestle makes feeding formulas? Wow. I can't imagine the formula would be that good considering what they put in their regular food products but you gotta do what you gotta do I guess. You can't switch him to Ensure or something like that in emergencies?? Unbelievable that you have to go through this. It's like they want him dead. They have no right to decide who lives or dies. They have no right to decide whether Jon's life is a life worth living. Yet they think they do. That's why I often hear it called "The culture of Death". So sad. Praying that Jon will make it through. Is there some kind of disability rights org you can contact?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    I did quite a long google search and couldn't find anything. Actually, I've just had another idea, what about searching the enteral feeding blog sites or let me see if there's a facebook page. Looking now...
    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


  6. #6
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    This forum looks like a good spot to ask, Rose and maybe join there. Lots of parents with complex kids http://www.carepages.com/forums/pare...feeding-issues
    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


  7. #7
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Update

    ((((((Thank YOU All)))))) ~

    Since the people, upon whom I've been relying to solve Jon's supply/food issues, aren't doing their jobs, I did their jobs for them.

    Today, I called Nestle and spoke to a customer rep, who gave me the scoop:

    A water line broke at one of their plants. The plant was closed for 2 weeks for repair. The plant has been back in operation for a month. Nestle added an extra production line and shifts to accommodate for the down time. No contamination occurred. Vivonex is available, with more on the way, and Jonathan will not be deprived of his formula.

    She also stated that our region was the last to be impacted by the shut down/shortage, which is why our pharmacy is gathering Vivonex from other sources, whose supplies were replenished once the plant was back on line. Ummm okay. Huh?!?

    I called our pharmacy assistant and left a message for her with this information. I provided her with Nestle's phone number and advised her that she give them a call and work with them to sort out Jon's formula.

    Regarding the respiratory supplies ~

    It finally dawned on me that Jon receives supplies from two other sources. His colostomy and urinary drainage bags come from one place, and his nursing agency supplies all other items, such as catheters, cath kits, saline, gauze, syringes, Q tips, mouth swabs, etc. Why it all can't come from one place is beyond me, although my best guess is MONEY.

    I don't know whether the nursing agency can supply respiratory stuff (traches, suction canister, Yankauers, etc.), but I do know that the colostomy/drainage bag supplier does provide respiratory supplies. Obviously, they are contracted with Medi-Cal for those supplies, so why not for the respiratory supplies as well? Yeah. Why not?!

    That was my, "Duh, Rose, why didn't you think of this sooner?" moment.

    I called my contact with the colostomy/drainage bag supplier and left her a message, requesting information about their respiratory supplies. Then I called the Medi-Cal liaison and left her a message that I want them to supply Jon's respiratory stuff.

    My tone was professional, but adamant. I said that I expect this matter to be resolved next Tuesday, with supplies delivered to Jon by Wednesday. I reiterated that this nonsense has been going on for a month, and I want it resolved, because Jon needs it resolved. I mentioned that I have called her every day this week, and she hasn't returned my calls, nor has her partner, whom I also called (two advocates for Regional Center consumers, who are liaisons to Medi-Cal). I said, "This issue is critically important to Jon's safety, health, and well being. You need to respond to his needs, and I expect you to do that."

    I didn't say, "If you don't, I'll file for a Fair Hearing against Medi-Cal and Regional Center. And you'll need to be prepared, because I'm pretty darn good at Fair Hearings. I'm also friends with Regional Center's Executive Director."

    But, if this matter isn't resolved next Tuesday, that is exactly what I will say. I am done with this bureaucratic garbage. I need peace of mind that we will have everything we need to give Jon proper care and keep him healthy.

    And at that Fair Hearing, I will emphasize to the State how much it is saving by having Jon at home, with us as his care providers. I will remind the State of the costs of Jon's ICU stays, which we strive to prevent with our home care.

    Then I'll hand the State the long list of the many big ticket items, which we've purchased for Jon, instead of asking for Medi-Cal to pay, such as his bed, mattresses, and lift, and smaller ticket items, like cases of gloves. "That's what we did with the money you paid us to be his caregivers." We're a bargain. All we need are Jon's supplies, and that's a bargain too.

    I hope it doesn't come to that. But if it does, they'll soon discover that they should have taken me seriously THE FIRST TIME I CALLED THEM!

    For now, I've done all that I can, so I'll have to park it until Tuesday. Because, of course, it's a long weekend to celebrate Martin Luther King, Jr. Or as otherwise known to most Americans, "a three day weekend." We'll be watching parades and any tributes to Dr. King. We'd be doing that anyway, even if we knew what a "weekend," let alone a "three day weekend," is. For a little while longer in our home, weekend=football. After that, we're lost til next season.

    So we've had Christmas, New Year, and now MLK interfering with getting any attention to Jon's respiratory supplies. As Jim and I were recalling the years past, we couldn't remember a holiday, when we didn't have some bureaucratic baloney or Jon being in the hospital. No wonder I dread the holidays! I've started removing decorations, and it's slow going. Why do I always think I can take it down in one day, when it took me 4 days or more to put it all out?

    Thanks so much for letting me unload this little drama on you and for your support. Please keep good, positive thoughts flowing that all will be well next week.

    I'm really too old for all of this crap!

    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.

  8. #8
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    Ugh aren't we all too old for this crap?! Fingers and toes crossed that this gets worked out IMMEDIATELY! Positive thoughts definitely coming your way next week, Rose!!!
    Good luck with this malarkey nightmare. xoxo
    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


  9. #9
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    ((((((Lisa)))))) ~

    Exactly. It's not the same as an Eggo Waffle! One of the ways that it's different is that more people eat Eggo waffles than use Nestle enteral tube feeding products. Less people affected, less news about it. And, maybe Nestle didn't feel it was necessary to announce it? Might make stockholders a little nervous?

    When I called Nestle today, I put on my "Journalist's Hat," and interviewed the rep as if I was a reporter after a hot story. Of course, I explained that I was calling on behalf of my son, but I decided to use this approach, as opposed to the Hysterical Mother approach. It worked. She didn't hesitate to give me the story. Whether it's true, I have no idea.

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

    Nestle makes several enteral and supplemental formulas. They are all derived from chemicals, maltodextrose, soy, and corn, unfortunately. But the Vivonex is complete nutrition, and it contains a lower amount of soy (which is contraindicated for people with hypothyroid), and Jon has been on it since 2009, with the exception of our brief, and unsuccessful attempt at a blenderized diet of real food.

    There are numerous enteral feeding formulas on the market, but Jon's body is used to Vivonex, and if we have to change to another formula, he could have problems with tolerance, such as vomiting, diarrhea or constipation, cramping, bloating, fluid retention (some problems he has already periodically). It's the known vs. the unknown.

    In an emergency, we would have to risk trying another formula or trying real food again. Ensure is a supplement and wouldn't provide Jon sufficient nutrition for his daily needs.

    I don't think it's a culture of death, as much as a culture of greed, and not really caring about people, who have long term care needs and will never be able to repay the cost of their care. Regardless, it sucks.

    ((((((Donna)))))) ~

    Thank you for putting on your thinking cap and locating that forum. I actually belong to two forums for Gtube feeding, but they are both for blenderized diets.

    I am hopeful that I'm now on the right track with the formula, and I'll touch base with our pharmacy assistant on Tuesday, as well as the liaisons. Things are going to change next week, or I'm going to raise high the roof beam.

    It's true that none of us should be enduring any crap whatsoever with regard to caring for our children (or anything at all for that matter!). But when I say that I'm too old for it, I mean, well, I really AM too OLD to keep dealing with this stuff. My entire adult life has been one battle after another after another to obtain the services and supplies my sons need.

    I'm just war-weary and exhausted from it, and I need my energy to provide Jon's care. Every time I have to fight with an agency, I'm drained. I just don't want to do it any more! And I shouldn't have to do this.

    Jon is a palliative care patient. The harsh translation of that term is "the clock is ticking." Why can't the System respect that reality and allow me to spend the rest of Jon's life without stressful battles to get food and respiratory supplies? Or question Jon's programs and living at home? Or threaten to eliminate the majority of his IHSS hours? Or challenge me on my reporting of Jon's care hours? All of these things have happened in the last 5 years, usually right before Christmas.

    And doing this for 44 years has aged me far beyond my chronological age.

    A former colleague/friend of mine called out of the blue recently. It's been 30 years since we worked together, and probably over 15 years since we encountered each other at a Doobie Brothers' concert, when Jim and I took Jon and Michael to their last concert. He used to tell me that I looked like Stevie Nicks (I don't and didn't ), because I had "big hair" in the 80s and 90s, was blonde, and wore high heels. When I told him that I look MUCH DIFFERENT now (30 years later), he remarked that I'm only 5 years older than him.

    That's when I said, "Yes, but look at the life I've led. That has added at least 20 years. So, if we ever have a chance to see each other again, be prepared to see Stevie Nicks at the age of 85." (Of course, she will look better than I do! )

    My body feels old. I feel older than I am, and I look older than I am. This life, and I'm not complaining, just explaining, has taken a lot out of me. Especially the endless hours I've spent over 44 years fighting the System for literally everything my sons needed.

    Can you envision me doing this at the age of 80? Me either. But I feel like I'm there now.


    Thank you all so much for being here and helping me through this unnecessary situation. You're the best, and I love you!

    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.

  10. #10
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    Oh my sweet friend. I put a photo series on facebook the other day of sweet young soldiers before, during and after the experience of combat. I suggested that caregivers of course have no idea of the horrors of war, but they too have that exhausted look of 'knowing' - and having witnessed realities of life that are too too harsh. But their spirit was still beautiful, shining through their eyes even after. I know yours is too, Rose!

    About the formula: Most companies that produce medical products (nutritional ones too) have a nutritionist on staff related to the product or a physician (in this case, probably a nutritionist). Maybe you could find out who that is and try to befriend her/him. Just to be proactive for the next time and to have a name and a relationship. What do you think?
    Donna xoxo
    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


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