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Thread: Feeding Frenzy

  1. #21
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Question Were They Delivered?

    ((((((Donna, Alex, & funnylegs4)))))) ~

    Thank you so much for your support. Donna ~ what bags are you washing and reusing for Nick?

    Well, guess what did not arrive today?

    If you guessed respiratory supplies, you win!

    Not even Jon's colostomy bags and drainage bags.

    Nothing. Zip. Zed. Zilch. Nada.

    Did anyone call me today with a heads up that the supplies weren't going to be delivered? Did my contact person at the colo/drainbag supplier call? Did the liaison call? Did the Referrals gal at the doctor's office call?

    If your answer is, no, then you win again, and you should consider playing the Lottery.

    How do you think that I reacted, when I opened the front door at 6 p.m. and saw an empty porch?

    a. Growled, snarled, cursed under my breath, since Jim is sleeping.
    b. Felt my blood pressure rise.
    c. Fisted my hands and grit my teeth.
    d. Shook my head and mumbled, "I can't believe this."
    e. All of the above.

    If you answered, e, then you are on a winning streak and should head straight for Vegas.

    Because I foolishly trusted all three of these people to work this out so that Jon's supplies were delivered today, I didn't call any of them to follow up. I actually believed that they understood how fed up I am with all of this nonsense and stressed over Jon not having the supplies he needs. When they told me what they were doing yesterday, I thought we were all on the same page, and that they would get this done.

    Guess what I'll be doing tomorrow morning?

    If you guessed, calling all 3 of these people, and trying to keep my fury under wraps while doing so, then you receive the Grand Prize!

    And that's exactly how I want to spend the morning, which is generally the time when Jim, Jon, and I are together and relatively awake. Especially tomorrow, since it is Jim's birthday. Yes, let's see if we can have the dagnnabit System spoil another special day for our family. Grrrr ... I even managed to sneak in a surprise for Jim, which is hard to do when you are together 24 hours a day and use the same computer! I just wanted it to be a quiet, peaceful day. Now this ... this ongoing issue that just won't get resolved!

    Oh ~ and just to keep it fun and interesting ~ we had a power outage today! While Jim and I were cooking brunch. Jon's bed deflates instantly. So we left our half cooked meal on the cold stove, and Jim began the process to set up the generator. By the time he removed the screen to Jon's window, the power returned.

    Now, call me technologically deficient, but after 3 forced outages to update our system, I don't think this should be happening.

    But then depriving a palliative care patient vitally needed supplies to save him from drowning in his own secretions shouldn't be happening either.

    It's clear to me now that we are going to have to purchase Jon's respiratory supplies to have on hand to cover these kinds of transitions and denials of service in the future. And I see more of this in the future. We are going in the wrong direction. I don't know whether this is the fault of how the Affordable Care Act was written, or if it is a knee jerk reaction to the ACA by the medical community. Regardless, it doesn't bode well for any of us right now.

    I will awaken tomorrow to fight another day. And I will make certain that our celebration for Jim is not disrupted. How I'll do that, well ... I don't know. If I'm on the phone, and then the phone rings with return calls, and back and forth for hours ... we'll just have to do the best we can with what we've got and make it a party. The surprise will be a surprise, no matter the outside influences of the moment. We grab it when we can ~ the joy of life.

    Stay tuned, my friends ~ it ain't over yet!

    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. #22
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Unhappy Still Not Right!

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

    And thanks for listening to my never-ending saga of System Screw Ups!

    Last Night

    Jon blew up with fluid; some suctioning required; we need a new canister/set up.

    This Morning

    I called the colo/drainbag rep to ask if she'd received the script from Jon's doc.

    No. She hadn't.

    I called the Referrals gal at the doc's office.

    By her voice, I could tell that she was/had been ill, which she confirmed. Out 2 days this week with a nasty respiratory virus going around. Apparently the flu shot doesn't cover this, or any of the other stomach bugs, and fevers, making the rounds here.

    Yesterday, Jon's doc went home early, since he has this yucky bug now. He's out today. No way to obtain his signature for the script.

    I suggested that another doc in the office could sign the script. Jon has been receiving these respiratory supplies since 2009, with his initial supplier. It's in their computer records! I'm not asking for a controlled substance! I need respiratory supplies! He's a trache patient! For crying out loud!

    Noon

    Referrals gal called me to tell me that a doc signed the script, and the script had been faxed to the supplier, now we awaited Medi-Cal's authorization for the new supplier.

    5:30 p.m.

    I heard the drop of a box at our front door, while I was attending to Jon. When I finished with Jon's needs, I opened the front door, found the box with the respiratory supplies, opened the box, and discovered:

    NO CONNECTORS FOR THE CANISTERS!

    Canisters, which don't look like the ones we've been receiving from our initial supplier. Tubing. No connectors.

    And oh! Look! It's Friday! Yeah. Friday. That means wait til Monday or Tuesday to get those connectors.

    And that means that I will clean the existing connector with boiling water, hydrogen peroxide, and more boiling water.

    Good times.

    Did I explicitly state and write on the email list of supplies that Jon needed suction canisters (DeVilbiss), 5' tubing, and connectors? Yep, I sure did.

    Was that list sent to the colo/drainbag (new supplier)? Yep. Was it sent to the Referrals gal? Yep. Was it sent to Medi-Cal? Yep.

    Seriously, unless I go to the supplier and gather the supplies myself, what more can I do to get what Jon needs?

    On a brighter note ~

    This morning, before the phone calls began, Jim and Jon were watching the morning game show on TV, and I came into the room with gifts, singing Happy Birthday. Jim was shocked. He protested, "But I don't need anything."

    So I said, "Okay," and turned to walk out of Jon's room. Then, I returned and handed him his gifts, "You need this."

    I had whispered to Jon last night (just for fun, because Jim was sleeping and wouldn't have heard me anyway) that we had surprise birthday presents for Jim and told Jon the whole story of how I hid them from Jim for a week, and how fun it will be to surprise him. I called it "our secret surprise!" And Jon was delighted.

    So Jon helped Jim open his gifts, and Jim was very pleased. We gave him DVD collections of his favorite British TV programs (from eons ago) and the Secret Policeman's Ball(s) (Monty Python charity concerts for Amnesty International). I left Jim and Jon to enjoy the videos, while I made phone calls and breakfast.

    After breakfast, Jon had had his fill of British humor, and opted for one of his movies. But Jim watched a couple more of the TV shows, while I cleaned, showered, etc. And hearing his hearty laughter lifted my spirits. He does need this. It's like a tonic for stress for him.

    Tonight

    Jon's G Tube port came off! How? I have no idea! But he was laying in water, which had leaked out of his G Tube, so I gave him another bath, and contemplated waking Jim to change Jon's sheet. I can't do that alone, because Jim has to help with turning Jon.

    But turning Jon at night risks sudden fluid build up and vomiting. Weighing the situation, I placed an under pad behind Jon to cover the wet sheet, then pulled Jon up in the bed, because he was indicating that he was ready to fall asleep. That also impedes turning. Turns are quite painful for Jon, because of his hips. And when he's half asleep, he's not able to participate fully in his turn.

    Within a few minutes, Jon was sound asleep. This is good. No fluid build up or gagging tonight. I was able to start his feeding on time for a change.

    What adventure awaits us tomorrow? I guess we'll find out. Tomorrow.

    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. #23
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    Rose, I know we have never met but I feel very close to you and your family and it breaks my hart to hear all that you have to do just to get the vital supplies for your son. No one should have to put that much time and effort into these details. I wish so badly that I could help. I'm so glad that you were able to surprise Jim with a birthday gift that he and Jon could share. Laugher is a very good medicine! Praying that things get easier and you get all your supplies.
    Mary Grace

  4. #24
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    ((((((Mary Grace)))))) ~

    Thank you so much for your love, prayers and support. I feel very close to you and your family too, and I'm so grateful for your friendship. And you do help! By being here, supporting us, praying for a resolution. Tremendous help. Thank you! And you know, back at you!

    Today, Jim and I had a really close look at the suction canisters, and we Googled them and finally realized that we couldn't use our existing connectors for these canisters. They are a different brand and design. And according to our research, they're also the cheapest! Oh, yay! What a good choice we made here with this supplier!

    I insist on a certain kind of drainage bag and colostomy bags/supplies for Jon. They always provide him with those supplies. Why are they downgrading his respiratory supplies?

    Finally, Jim said, "Enough of that. We'll deal with it Monday." Then he turned on one of our favorite Fawlty Towers episodes from the collection we gave to Jim for his birthday. And Jim and I laughed, just as much as we did the numerous times we'd seen it years ago, when it was on PBS. Excellent therapy for us.

    Laughter is good medicine, really. It helps to fight the stress hormone, Cortisol. And so do tears. So I take a dose of both nearly every day.

    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.

  5. #25
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    So glad Jim enjoyed his birthday surprises!! And so sorry to hear the new supplier is not doing their job. I definitely would be crying over having to keep calling on this, that is just wrong! I can't believe they substitute a different part when you order something so specific. Like Mary said, it breaks my heart to read how you have to keep dealing with this kind of treatment. I just can't imagine!! I pray you are able to get the correct supplies tomorrow! (((hugs)))

    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!!

  6. #26
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    Arrow

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

    Thank you so much, dear friend!

    Here's the thing ~ For 5 solid years, we had the same four suppliers. 1. Formula, pump, bags, GTube supplies. 2. Respiratory supplies & O2. 3. Drainbags and Colostomy supplies. 4. Everything else. All four suppliers were efficient, on top of everything, and promptly sent out supplies (same day or overnight).

    Then, the Affordable Care Act kicked in, and apparently #2 went berserk (it's a GIANT CORPORATION too) and cancelled their Medi-Cal contracts. They still supply Jon's oxygen, which is only here "in case." I guess it's a bigger money maker for them than canisters and Yaunkauers ("yawn-cowers").

    Next we discover that both of the new respiratory suppliers are providing different products than the original supplier, and that their products are much lower in quality. We were getting DeVilbiss canisters/connectors, since we have a DeVilbiss machine. On line, those canisters/connecters are $25 each. The kind we received last week from our colo/drainbag supplier is Bemis (red top), which goes for about $5 on line.

    And they're useless, because we don't have a connector from the canister to the pump. We can't use them!!!

    I want to hope that it will get better, but I strongly suspect that it won't. We're stuck with inferior service and inferior supplies. Unless we buy it ourselves, as we've done in the past.

    In the old days, Medi-Cal suppliers refused to send Depends for Jon & Michael. They sent sandpaper, thin, non-fitting garbage. They billed Medi-Cal the same amount regardless of the brand they sent, but their brand ensured them a large profit. So, we ordered Depends by the case on line, and we paid for them.

    We still have a couple of bags of Depends in the garage rafters. When we were putting the Christmas decorations on the rafters a couple of weeks ago, Jim said, "I guess we can donate or throw out those Depends."

    I thought for a moment and answered, "No. Maybe we should keep them."

    Jim thinks I'm a hoarder and can't let go of things (this from a man, who has a thousand t-shirts, but finds all of the frayed, old ones "comfortable"). Jim said, "Rose, Jon's never going to wear those again."

    And I said, "Who's talking about Jon?"

    One way or the other, this will be sorted out tomorrow. I've already sent an email to the new supplier, with photos of the canisters and missing parts taken from on line sites, which sell them. I will call her, and we'll have a chat. She's a nice gal, and we've been fine for 5 years. I'm a reasonable person, so we'll just talk about it, and she will do it my way.

    "It was hard enough, when it was easier. Now, it's nearly impossible." I don't know how many times I have said that in my adult life.

    Tomorrow awaits!

    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.

  7. #27
    Distinguished Community Member andromeda31's Avatar
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    LOL! Nothing wrong with hoarding! :) (you should see my attic, garage & basement!) It seems every time I switch suppliers, it is not the same level as service that we had before...sad to say! My bane is the wheelchair. We are getting the new seat on Tuesday, no word on bathchair and have not heard about gait trainer. I had to call our AFO guy last week as I found a crack on hers and they are 1.5yrs old now. He also does wheelchairs & walkers too. I am considering maybe switching everything over to him. He used to be a PT where we go for private PT and I think he really cares...plus he comes right to our house! Anyway, we are on our 3rd supplier for wheelchair servicing. The original one we went to stopped doing wheelchairs suddenly a few years ago. They were so nice to work with and so knowledgeable...I miss them! Why does change have to suck so bad?!

    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!!

  8. #28
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    ((((((Lisa)))))) ~

    Oh, Lisa, you always make me feel like I'm not alone! Thank you!

    Our garage is not overflowing because I don't want to get rid of 90% of it. It's overflowing because through the years, we've accumulated stuff to donate and haven't rounded it up to do so. We have no need for the boys ancient hospital beds, but they still work and might help someone, so we can't just throw them out. But this is our year to conquer that beast, and we started by throwing out old Christmas garlands and decorations last week. Bit by bit, I hope we continue to make progress.

    Go with the PT, who comes to your home. We've had a PT from the hospital visit at home for every wheelchair our boys have had since the mid 90s. It's so much better and more relaxed and personal.

    I'm so sorry that you haven't received any of the equipment Caitlin needs. It's infuriating. And yes, it sucks. Big Time.

    It's just so wrong that our children have to suffer, while waiting for people to do their jobs. And it's just so wrong that our children have to suffer, because the medical community is knee jerking and hand wrenching over Obamacare, overreacting to their expected negative outcome of EVERYONE having access to health care. It's such a novel idea in America. Not the rest of the world, but here, it's scary, because it's new. And what scares them? Loss of revenue! Loss of unbelievable, ridiculous profits.

    The concept is that everyone has health care coverage at an affordable cost. The problem is that you get what you pay for. Our physicians may care about us, but the corporations, who support their practices, don't. The hospitals, where they work, don't. They care about Money. Getting as much of it as they can. And medical suppliers ~ well, they are strictly in that business for the dough. It's so unregulated, it's obscene.

    I digress ...

    Two connecting tubes were delivered today. One with grips on both ends. One was just a plastic tube. Jim suggested cutting off tubing from one of Jon's drainage bags (a style he doesn't use, but comes with the catheter change kit) and using it as the connector. Looks like that's what the supplier did. I mean, c'mon!

    I did call her this morning, and she told me that they don't carry DeVilbiss canisters (money), but that these canisters are supposed to be universal (cheaper). She also admitted that she forgot to include them with Jon's supplies sent on Friday (duh).

    She asked me how many connectors I wanted, and I replied, "Well, we have 6 canisters, so we need 6 connectors."

    How basic is this? Seriously, how BASIC is this?!?!

    So she sends 2, not 6, and they're basically just short plastic tubes. This canister must not come with connectors, like DeVilbiss does.

    Looks like we'll be ordering them on line. I am beginning to lose all patience with this nonsense. I could spend the rest of Jon's life trying to find a better supplier. Not doing that.

    Thus, I believe, ends this saga. We went out with a whimper, not a bang. And I can't fight the System, when it is going berserk. We just have to do whatever we can to make the best of our situation and keep Jon healthy on our own.

    Sigh. So much sound and fury ... for so little.

    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.

  9. #29
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    You're welcome!!! Ah so you are in the U.S huh Rose? I wasn't sure. I am not going to get political here but I have a friend who uses catheters to use the bathroom and they are finding a lot of bugs with the system since ObamaCare/ACA whatever you want to call it started. They have a ton of hidden costs and delays so far. So it might be that. Sad it has to be this way. Maybe when they ask how many tubes you can order more than you really want so you'll get the number you originally wanted by default. If there is a way you can buy the supplies yourself shoot for that. Good luck. Happy Birthday to Jim!!!
    Last edited by funnylegs4; 01-28-2014 at 05:46 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  10. #30
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    ((((((funnylegs4)))))) ~

    We used to have flags under our names to designate country, but that disappeared with the last change, I guess. Yes, I am American.

    There is no doubt in my mind at all that this problem with Jon's supplies after 5 years with no problems is the result of Obamacare/ACA. But as I stated, it is the corporations, who are overreacting to the new health care laws, guarding their profits with greed and disregard for those, who are in need of medical care and supplies.

    People are led to believe that it is the ACA law causing these problems. I don't believe that. I believe it is corporations and insurance companies causing these problems, because they fear losing the profits by being required to serve everyone.

    Jon is only allowed so many of each supply, per Medi-Cal guidelines. The doctor prescribes more, and we get more, but now we're getting inferior quality. And the suppliers are incompetent.

    If we are relegated to buying all of Jon's supplies, we will become poverty stricken before too long. We already buy many of Jon's supplies, but we shouldn't have to do that, nor should we be forced to buy more of them.

    Thanks for your birthday wishes. He's still watching the shows and laughing. It's good for him.

    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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