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Thread: Feeding Frenzy

  1. #11
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Exclamation Another Update: Respiratory Supplies

    ((((((HUGS TO ALL))))) ~

    This should probably be posted under my Trache Tales thread, but this one is closer to the top, and it's all one big, glommy mess, so I'll just plop it here.

    Today, I called the Medi-Cal liaison to inquire about the status of Jon's respiratory supplier. She was out last week with a stomach virus (somehow I knew she was out ill). She had 3 suppliers lined up to call today, and I said, kindly, "How about using the supplier we already have for Jon's drainage bags and colostomy supplies?" And, even though that company was not on her list of 3 suppliers, she agreed that was sensible.

    Here's what needs to happen:

    The existing, inferior supplier must fax the prescription for Jon's supplies to the new provider of his respiratory supplies. The new provider (who provides the drainage bags/colostomy supplies) then coordinates with me on what we need.

    The success of this mission is dependent upon the current inferior supplier's effort to give up the contract for Jon's supplies. These people don't even answer their phone calls or return messages, so do you think this will go smoothly?

    I'll be on the phone tomorrow with the liaison, the new supplier and the old supplier, making sure that this transition occurs. Jon's current suction canister is 1/2 full, and we have no connectors and tubing for the other canisters the inferior supplier sent to us. So our only option is to rinse the existing connectors and tubing in vinegar. And reuse them. I can't tell you how much I don't want to be forced to do that.

    If we were in the midst of a disaster, an earthquake, a fire, then I'd be boiling water and disinfecting everything in sight. But the only disaster here is the one created by the System, and it is obscene.

    It should never have reached this point in the first place, but here we are. And I am again punching brick walls with my bare fists to get what my son needs.

    My knuckles are raw, but I'll keep punching. It's what I do. It's who I am. It's how I roll.

    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. #12
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    Ugh. Just makes me exhausted reading about it. Who needs this S*&^T?! Frustrating!!!!! Good luck cutting a swath through the bureaucrats, including the lazy ones!
    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


  3. #13
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    Rose I agree with Donna it all makes me exhausted just reading what your dealing with and have been for so long. Praying it all smooths out and you guys get a break. Wish I could do more for you than just cyber (((HUGS))) and prayers.
    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    Hi Rose!

    Would it be possible to instead contact whoever wrote the original prescription for the supplies and have them send it to the new supplier? I am assuming a doctor writes those for you....I know most of our stuff somewhere along the line a doctor signs something for it! :) I can't imagine bad supplier is going to make this easy for you....hopefully you are able to bypass them completely! I hope the liaison is helpful in this process....

    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!!

  5. #15
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    Thumbs up It's In the Works Now

    ((((((Donna, Mary Grace, & Lisa)))))) ~

    Thank you for your positive thoughts, prayers and supportive frustration with this ridiculous situation.

    This morning, I called the liaison, who was still negotiating with the old supplier to send the fax of Jon's supplies. I decided to take the reins.

    I called our colostomy/drainage bag supplier, and they hadn't received the fax from the inferior supplier. No surprise. My contact at the colo/drain supplier called me and told me that she would fax the list of Jon's supplies to our physician (yes, Lisa, he's the original source for the prescription), get a new script, and then assemble the suction canisters, connectors and tubing, as well as trache drainage pads to be delivered to Jon tomorrow, with his colo and drain bags.

    I emailed my contact with the list of Jon's respiratory supplies, so that she could fax it to Jon's doctor. (They already have this list, but why risk that they can't find it, right?)

    I called the liaison and left a message for her. At 11 a.m., I was finally able to make breakfast, and just as I began eating, the liaison called. And she said ...

    "The current (bad) supplier has one week left on the contract. So I was thinking we could keep them until the end of the week, get them to send you the canisters and stuff, and then start with the new supplier next week."

    And I said: "NO! Absolutely NOT! They haven't sent me the correct supplies, which is why we're getting rid of them! They are unresponsive! That's why we're dumping them! I've got it in the works with our colo/drain supplier right now. It's happening. Right Now! I'm am so DONE with this issue, and the stress it has created for me is wearing me out. NO! This contract is being transferred TODAY!"

    And she responded, "Okay. I understand. I don't blame you."

    I was totally shocked at her suggestion of retaining these losers for another week and attempting to squeeze supplies out them, which they refused to send over a month ago. Has she not been paying attention to my daily phone calls of distress?

    And so, once again, because I persisted relentlessly and insisted emphatically, and I took control, something is happening. And if all the stars align in our favor, Jon should have his supplies tomorrow, and we will be connected to a reliable, responsive supplier from now on.

    Whew! Now, can I have the holidays back, so we can enjoy it crisis-free?

    I'll keep you posted on how it unfolds. I better be telling you that Jon's supplies arrive tomorrow. Otherwise ... well, it won't be pretty ...

    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.

  6. #16
    Distinguished Community Member andromeda31's Avatar
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    OMG Unreal!! Fingers crossed that the new supplies arrive tomorrow! Sad that the motto has to be 'if you want something done right, do it yourself'. Doing the vinegar washing doesn't sound like something people in a developed country should have to do!

    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!!

  7. #17
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    Red face

    ((((((Lisa)))))) ~

    Wow, you just said a mouthful there, my friend! How right you are: vinegar washing isn't something we should have to do in this country. Nor should I be forced to do this, because of the incompetency in our system. The risk of infection to Jon, no matter how well I clean it, is just enormous. Realistically, the canister should be changed daily, but they will never ever pay for that at $25/canister.

    At least that's what they cost on line, and I'm considering buying a few to have on hand as extras, now that I realize I can do that. All of this prescription business, and I can buy them on line? Really? Never dreamed it was possible!

    The point is that I shouldn't have to pay for them, or any supplies, or equipment. What if we couldn't afford to buy these things? What would happen to Jon? What if Jon didn't have me fighting for his every need? What would happen to Jon?

    That's precisely how wrong all of this is, because most people don't have an advocate or a caregiver or relative, who knows how to go after the System for what they need. Most people can't afford to supplement what Medicaid doesn't cover or fails to pay for adequately. It's just wrong on every level that we have to go begging.

    My mind is still boggled that the liaison suggested we stick with the inferior supplier til the end of their contract this week. What part of "this company is incompetent and messed up Jon's vitally needed supplies and pI$$&d me off" did she not understand over the past several weeks? How would that arrangement help Jon? It wouldn't, but it would somehow satisfy some internal governmental BS paperwork/documentation or MONEY issue.

    In the "Things I Wished I'd Thought of Sooner" Department ~

    For over 20 years, I have been working with the Referrals gal at Jon's doctor's office. She has seen me through numerous changes, and specialist searches and issues with Medi-Cal.

    I gave her name and number to the liaison and the colo/drainbag provider, because I knew that she would expedite the process with Jon's doctor.

    So sure enough, the liaison called this afternoon telling me about the Referrals gal and her involvement.

    Why didn't I just call her first, when all of this started?!?!

    This is where my age and war-weariness is showing. I should have realized the first day, when the issue of losing our existing supplier came up, that our colo/drainbag supplier could fill the bill with respiratory supplies. I should have called the Referrals gal and asked her to fax the colo/drainbag supplier our respiratory supplies list. The Referrals gal could have called Medi-Cal and told them that we wanted to combine supplies with one supplier. It would have been done!

    Accckkkk!

    I figured it out, but it took me too long, and it caused me all of this stress! Dagnabbit!

    Well, lesson learned. As long as I remember it!

    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. #18
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    We do vinegar washing - bags and supplies are supposed to last 1 week. We didn't have to in the UK, use and toss each time. Sigh.
    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. #19
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    Earth Mother to Angels - we have a lot in common. I have to fight to get most of what I need, Tests, Supplies, Scripts, Etc. - Not duo to incompetence, but I believe that my NPR can be forgetful, Probobly because she is so overwhelmed with patients so I try to cut her some slack. Good job going right to Nesle and even better just by-passing Medi-Cal angoing right to your doc for new scripts for Jon. That and the insurance Co. - they balk at everything - Almost everything except my basic meds have to be approved - Not always sure my NPR is up tp the task of keeping up with all the requirements - only about a million to get something done or gotten - they want reams of proof for ANYTHING not in the formulary although Hormone therapy - one would think it would be a no brainer but no At least two blood sticks, and extensive documentation for a $15. Shot that I could afford, I would.
    Anyway, I hope that things go better for you and Jon - He looks like a happy kid and getws the best care possible.
    BlessingsAl
    Aex44

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    ((((((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.
    Very true. People often only think of themselves and what they want. I don't think people value life as much as they should in general. Interesting about soy and hypothyroid. Heh, what do I know about feeding formulas? ;) Don't be so hard on yourself about not figuring it out sooner. The important thing is that you figured it out and did something about what was wrong. You did the right thing. There are always things that we can improve on. So glad you got it sorted out.
    Fingers crossed that the new supplies arrive tomorrow! Sad that the motto has to be 'if you want something done right, do it yourself'. Doing the vinegar washing doesn't sound like something people in a developed country should have to do!
    Took the words right out of my mouth Lisa!
    Last edited by funnylegs4; 01-23-2014 at 05:37 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
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