Page 1 of 2 12 LastLast
Results 1 to 10 of 18

Thread: The Broken Bed 3: Trilogy

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,039
    Blog Entries
    1

    Default The Broken Bed 3: Trilogy

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


    Jim and I ordered a new bed from Hill-Rom, and it will be in our area the week of June 17. We are anxiously awaiting its arrival, because the rental bed is ruining us. Aching shoulders, arms, backs, you name it, and Jim and I have it. The rental bed has a constant incline at the head of about 15 degrees, so pulling Jon up in the bed is like lifting a 160 pound boulder up a steep hill for us. This is just ridiculous!

    We had to get a doctor's prescription for this new bed, and our doc quickly faxed the form for us, for which we are extremely grateful. But the rigamarole we had to go through, with Hill-Rom contacting Medi-caid to find out whether they would pay for the bed, and the whole authorization process, waiting game, and potential denial was more than we can stand. We've had the rental bed from hades since March. So we're paying for the new bed, and it better be the last bed we ever buy for Jon.

    While I'm on the topic of medical equipment and supplies, let me share with you what's been happening in the past few months with Jon's supplies.

    Feeding Pump: Ross Patrol lost their business in the feeding pump area, so now we have to have a Kangaroo pump for Jon's G Tube feeding. I could spend several minutes describing how the Kangaroo is inferior to the Patrol, which we used for 2 years, but here's the main gripe: the pump is so strong that it pushes the feeding line out of the G Tube causing major formula spills in Jon's bed or on the floor. Oh yes, in addition to struggling with the bed, we've been dealing with formula floods.

    So, the pharmacist sent us a "clamp" for Jon's G Tube and the feeding line plug. This clamp is flimsy plastic, and it gets in the way of the G Tube port. A clamp will be sent out with Jon's formula every month, because they are "known to fail easily."

    The Patrol pump feeding line plug had a place to connect the G Tube port cap, which held the plug and port together. So simple.

    But the Kangaroo pump is a "computer," and it's high tech. And it's garbage.

    But we're stuck with the Kangaroo pump and this absurd "clamp." My hands just don't have the same dexterity at my age to manage this kind of micro-stuff.

    Drainage Bag: For Jon's indwelling catheter. We get special drainage bags, because I can't use the clamp on the drainage bags, which come with catheter kits. Again, dexterity of fingers, strength in hands is the issue for me. The manufacturer of the drainage bags, which I can use, has been consumed by Covidien. This corporation is eating up every medical supplier/manufacturer, and replacing their quality supplies with yes, garbage.

    The plastic hooks, used to hang the drainage bag on the side of the bed, break. After one week, they just break. Additionally, there is no guide for the drain tube to keep it upright, It is garbage.

    Medicine Cups: Oh yes, right down to the smallest thing. I just opened a new "sheath" of 100 medicine cups, and instead of hard plastic, they are soft plastic, with a different shape. In 14 years of using these medicine cups, I have never received a batch like this one. We re-use the medicine cups, but the reduced quality of these cups will likely mean that they'll get tossed out sooner than the others.

    Jon needs a tremendous amount of supplies, so we'll watch for a deterioration in quality with all of those supplies as time goes on. This is just the beginning. But I will lay odds that the suppliers and the manufacturers are making a HUGE profit off of the garbage they are peddling.

    The DME, from whom we are renting Jon's bed, was just bought this year by Invacare.

    So the trend seems obvious: big corporations gobbling up smaller entrepreneurs. That results in less competition, the consequence of which is poorer quality in the product.

    Stay tuned for my next consumer update!

    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
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    954
    Blog Entries
    9

    Default

    You are spot on, Rose. The large companies gobble up the smaller ones, they work in tandem with the government funded home health delivery agencies and in the US, the insurance providers and once the machine becomes a behemoth, there is no transparency and no accountability. It's all about profit and the profits are HUGE. It's downright despicable. Profits made on the backs of society's most vulnerable citizens. Next, they will be taxing and extorting money from newborns and palliative patients, wait, they probably do already. Good luck with the new BED and God help you with the feeding pump, the med cups and the catheter supplies. sigh.... xoxoo
    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. #3
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Hi!

    Wow! I hope the new bed comes on time and is paid for 100% by the insurance!! Fingers crossed! Can't imagine the constant lifting you do, occasionally I have to heft Caitlin up in her bath chair and she is only 50lbs. I think of you lifting Jon when I do that. I hope the new bed will solve that for you!! Brian & I read a really great book about the monopolies today...Cornered: The New Monopoly Capitalism and the Economics of Destruction by Barry C. Lynn. Don't know if you have a lot of time for reading, but it was really a good read! Very eye-opening and scary!! My comment to Brian about it was I wish they would tell you what we (as the 'little people') could do to thwart it. For our food, we try to buy local, grow/can our own, etc. But for some stuff, especially medical supplies!, what choices do we have?! After reading that, I did save money buy buying my contacts from target optical dot com versus getting them thru pearle vision. I see an independent doctor of optometry there for the exam but since the contacts always came to me in the mail anyways and both places are ultimately owned by luxottica I figure I will go for the cheapest...the product is the same contacts in a box so it didn't matter from where they came. Shame that the quality of Jon's supplies is being compromised to grow a company's profits....wonder if the bean counters ever think they might need to use those supplies one day??

    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!!

  4. #4
    Administrator/SYSOP Mike Weins's Avatar
    Join Date
    Oct 2006
    Posts
    952
    Blog Entries
    1

    Default



    Rose I sure hope that the new bed is just like the old one. It is disgusting how big companies make their record (and every year it's a new record high) profits off of the most vulnerable.
    Question: Why can't I post links or pictures?
    Question: Why can't I have a signature, avatar, or profile picture?
    Question: What's wrong with my account?

    Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people who's posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  5. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,039
    Blog Entries
    1

    Default

    ((((((Thank You!!!))))))

    Donna ~

    That's exactly what is happening.

    Drainage Bags/Catheters/Covidien Takeover

    Jon's drainage bags and catheters (which are silver tipped to reduce bacteria and are special ordered) were made by Kendall. They've been around for YEARS, and their quality, for what it is and made in China, was the best of all manufacturers. They were bought out by Covidien. So far, we still have a supply of Kendall catheters, but when they run out and we get Covidien catheters, I fear problems with leakage and clogging. Then we're talking serious problems for Jon.

    The Covidien drainage bags are similar in design to Kendall, but the tubing twists at the catheter junction, and the hooks on the back break, so it's impossible to hang the bag on the bed rail, and there is no chamber to guide the tubing into the bag at the bag juncture. They cut a lot of corners to make a cheaper product, but you know they are making more money than Kendall did.

    Covidien is cornering the market, because Medline products suck. Our nurses even say that, and Medline is what our nurses are given to use on patients.

    Our DME for the drainage bags has a contract with Covidien. That's how it works.

    Kangaroo Feeding Pump

    And the feeding pump ~ the pharmacy has a contract with Kangaroo to use their pumps with our home health agency's patients. I don't know who bought Ross' feeding pump division, but let's guess ~ could it be, Kangaroo, maybe?

    The pharmacist wanted to comfort me by saying, "The hospitals use Kangaroo pumps." That doesn't mean that they are good! They have a contract! And the hospital uses this ridiculous 5 way adapter with the G Tube, which I can never work with my arthritic hands, so I always ask the nurses to remove the dang thing, so I can get straight into the G Tube with a syringe. You know, the way it was intended to be used, before pump manufacturers made faulty pumps, requiring adapters and clamps.

    I'm already very sad that Jon can't have a blenderized diet of real food, given bolus, meaning that he has formula 18 hrs/day via pump. The fact that the pump is garbage, and we have to contend with the extraneous freaking clamp, has not helped me deal better with that disappointment. Grrr!!!

    The Hospital Bed/Invacare/Hill-Rom/Big Contracts

    As I mentioned Invacare bought the DME, from which we purchased Jon's alternating mattress and his Liko lift. They aren't serving residential customers any longer, which is abandoning a fairly large population of home bound patients. The first rep, who helped us with the rental bed and the attempt to find an Invacare bed suitable to replace it, left the company and handed us over to another guy, who is an Invacare rep (not the former DME). We just moved on to Hill-Rom, because as far as we could tell, they had the best offering for our needs.

    There again ~ Hill-Rom has hospital contracts. All of our hospitals' beds are Hill-Rom. And ~ ha ha ha ~ every time Jon goes in to ICU, his bed malfunctions, and we have to trade it out! True! So true! Once we tried their waterbed mattress for Jon. During transfer from it, the bed sprung a leak, and Jon was soaked. Kid you not! The nurses and aides were stunned. "That's NEVER happened before!" Ever in all their collective years of working there. I have heard that often about many things in my life, and it never, ever makes me feel better. Never happened before it happened to us! Well, aren't we the lucky ones?

    The Hill-Rom rep said to me on the phone, "Hill-Rom doesn't make junk. We are the leader in the industry, and we follow the regulations."

    Yep, I'm buying that. HA!

    We have no choice. We have to replace the rental, and the Hill-Rom bed seems to be the best option. I guess we'll find out how lucky we are after we get it.


    Lisa ~

    Medi-caid is not paying for Jon's bed. We are. The whole enchilada. Why? Medi-caid told our Hill-Rom rep that it "might cover a portion" of the cost of a new bed, "although rental is preferable." I have been through the process with Jon's alternating mattress, which after 2 months, Medi-caid denied authorization for purchase. And the Lift. They didn't pay that bill. We can't wait for them to say no. And they'll say no.

    That sounds like a great book, and I wish I had time to read it. Perfect example of monopoly: cable. We only have one cable company serving our area. It's them or Dish or Direct TV. No real competition between cable companies. Poorer service, poorer quality, easy when you own the territory.

    If you can find the same contacts for a cheaper price, that is definitely the way to go! Designer labels are superfluous!

    With Jon's new bed, it should be easier for us to pull him up, as the head of the bed will be flat. The rental bed has a permanent incline of 15 degrees for some unfathomable reason (maybe it's broken?) and that makes it very difficult to pull up Jon. He slides all the way down to the bottom, where his feet are touching the footboard, so it's a long haul up to the headboard. We have to do it in 2 lifts.

    Another benefit is that it will be lighter, so that I can move it away from the wall, and I can remove the headboard, which will allow me to use Jon's bottom sheet to pull him up. That means that Jim doesn't have to be awakened to help me pull Jon up. Jim is tall and has long arms, so he can use the sheet to pull Jon up on the rental bed. I cannot. I have permanently injured my right upper arm in trying to do that a month ago. Jim says that he can hear me moan, every time I turn over in bed at night. (Jim's awake on his shift, of course.) The pain wakes me up too. Sorry ... I don't mean to be moaning ... but it just irritates me that this happened, because of a stupid bed! I'm still pretty strong in my arms (not my hands for grasping and gripping), and I have a bit of bicep for a gal my age, just from lifting my boys for 43 years. But this bed has really done a number on me. And Jim. At his age, I worry about a hernia. But at least he has Medicare now, if that happens.

    Ah, the bean counters ... if they have enough beans, they don't need to worry about ever having to use one of their lousy products. They can commission their slaves to make gold and diamond encrusted drainage bags and slot machine feeding pumps, with a Blu-Ray 3D movie screen. Billionaires have no worries.

    Mike ~

    I hope the new bad is far superior to the old one, because the old one collapsed its legs into the metal housing, with Jon in it! Then we got the Rental Bed from Nightmare on Elm Street. And it broke several times. We're just hoping the new bed functions properly for the rest of Jon's life.

    About 15 years ago, Jim and I glimpsed at the spec sheet for Jon's custom wheelchair (not motorized). Jim noted that Jon's lap belt, which was essentially a simple car seatbelt, cost $200. He said he could find the same seat belt at Kragen auto supply for $25.

    Profiting off of the needs of our most vulnerable people isn't a new thing, but it is getting worse as the years go by.

    Money. It's all about Money. And my question is: "How many billions of dollars does one person need? Really?"

    Help At Home

    Jon's nurse told me that all of the home health nurses have been instructed now that, unless the patient is actually dying, the nurse has to stabilize the patient, regardless of how long that takes. She's been told to not send a patient to the ER, unless that patient is in a life threatening situation.

    What is that about?

    Yep. Money.

    Yeah, well that isn't going to stop me from frantically grabbing the phone and dialing 911 for paramedics, if Jon needs help that she can't give, or if she's not here, when he needs help.

    The hospitals don't want us. We're too expensive. The home health doesn't want us. We're too expensive. Medi-caid doesn't want us. We're too expensive.

    All I have to do is look at what happened to B and his mom. Hospital kicked B out and sent him to a private acute care facility, where his treatment was nonexistent. But lots of money was being made. They gave no care, so it was pure profit for them.

    Thankfully, B's mom rescued her son from that hole, and now he is home thriving. Thanks to her, not the professionals, who were supposed to be providing him with care.

    I don't know in which direction we are heading , but we should all pay close attention. Most importantly, we should all be asking, "What can we do about 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.

  6. #6
    Administrator/SYSOP Mike Weins's Avatar
    Join Date
    Oct 2006
    Posts
    952
    Blog Entries
    1

    Default

    I remember it broke, but I thought you liked it much better than the rental, hence my comment hoping the new bed is at least as good as the old one was before it broke About the lap belt for the wheelchair ... the only reason they got away with charging so much is because they labeled it as "medical (or hospital grade). I remember reading about gurney straps and other restraints being no different than the ones available from auto parts stores and home improvement stores back when I was in the Navy (about 15 years ago ... maybe a couple of more). One of my friends was a coreman and was telling us about a memo he wasn't supposed to see. It's amazing at how over priced things were back then, and how much more over priced they are now
    Question: Why can't I post links or pictures?
    Question: Why can't I have a signature, avatar, or profile picture?
    Question: What's wrong with my account?

    Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people who's posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  7. #7
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,039
    Blog Entries
    1

    Default

    ((((((Mike))))))

    Yes, you're right. We did like Jon's original bed better than the rental. At least we could move it, and I was able to use the bottom sheet to pull Jon up. But it had its flaws too. We're hoping that the new bed is significantly better than the old bed and the rental.

    You are also right about the "medical need" justification for the inflated prices and profit. And just like pharmaceuticals, there are no regulations on DME prices.

    With Jon's current chair, I asked the supplier what the total cost was (this was about 2007), and he answered, "Over $14,000, but Medi-caid won't pay that. We'll charge $6k plus."

    After I scraped up my jaw from the floor, I said, "We could buy him a CAR for $14,000!"

    My dad was a machinist mate in the Navy during WWII. Bless you, Mike, and thank you for your service.

    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
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,211
    Blog Entries
    17

    Default

    Feeding pump that is a computer=Such a bad idea. Too bad you can't just use gravity to get the formula in like I'v seen people do on TV. Hope the bed comes soon.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  9. #9
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Hi!

    I can understand about paying for it out of pocket....it is ridiculous all the hoops to jump thru to get equipment approved. Do they allow you to submit it after purchase for reimbursement? Just brainstorming! For Caitlin's car seat, the insurance wanted me to do it that way, buy first (out of my pocket) then they would determine if it were medically necessary and then pay me. I kindof felt like, whatever! (and maybe some other more colorful words too!) Still have to get on the race car seat investigating, end of school got in my way of that. It took 6 months for insurance to approve Caitlin's last wheelchair, I felt like, really?? She wasn't going to jump up and start walking in all that meanwhile!! Plus they only pay for the superheavy steel or whatever metal it is. I only know that it is not aluminum or titanium which are much lighter....for her to push and for me to lift. When she is done growing I am planning to buy one of titanium for her out of our own pocket. I look at it like it will be her 'car' or 'college'. <sigh>

    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!!

  10. #10
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,039
    Blog Entries
    1

    Default

    ((((((funnylegs4))))))

    Our old pump had a dial, so simple. The "e" pump, as they like to call it, has buttons to push, and prompts on the screen, many of which are really confusing. The screen is like a bright night light in Jon's room.

    We did feed Jon bolus (gravity), but he can't tolerate the volume he needs to get in one feeding to accommodate his 1500 calories/day. That's why he's a slave to the pump.

    ((((((Lisa))))))

    No, our Medicaid program doesn't do retroactive reimbursement. Everything has to go through the authorization process, and the King of Medicaid decides whether it is medically necessary or if Jon could get by on something less expensive or appropriate.

    They denied our request for a replacement of his alternating pressure mattress. Instead, they sent a static air mattress. And this was after Jon had 9 months of at home nursing for wound care on his buttocks. What more justification do you need for an alternating pressure mattress? The answer: Nothing! That's a perfect reason to get one!

    Sighing along with you, my friend. We look at Jon's mattress and bed as the car we would have bought him or his college education tuition. Or a contribution for his honeymoon, maybe help with a down payment on a first house, and tons of birthday and Christmas and just-because-we're-your-grandparents gifts to his children. Yes, sigh.

    Caitlin's wheelchair ~ a 6 month wait! And then heavy steel so it's hard for her and hard for you. I just want to ask your insurance company, "How is that helping?"

    Do they think you're looking at this race car seat, because you think it will be snazzy for your girl? For crying out loud! Of course, it's a medical necessity!

    Every year we have to fill out reams of forms for Jon's programs to prove that he's still eligible for the services. i feel like screaming in red ink across all of these forms: WHAT PART OF PERMANENTLY DISABLED DID YOU NOT UNDERSTAND?

    Frustrating! As if we all don't have enough on our plates ...

    We're about 10-12 days closer to getting Jon's bed delivered. Please cross all of your crossables that this new bed is the Bee's Knees and the Cat's Meow.

    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.

Page 1 of 2 12 LastLast

Similar Threads

  1. The Broken Bed: The Sequel
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 8
    Last Post: 04-24-2013, 05:56 PM
  2. The Broken Bed
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 9
    Last Post: 03-29-2013, 08:33 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.