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Thread: The Broken Bed

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default The Broken Bed

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

    Today, finally, all of the planets aligned, and Jim and I got Jon out of bed. Long overdue for a multitude of reasons, but we made it happen today.

    Jon managed well, although his discomfort was evident a few times. Jon's electric Liko lift worked perfectly, and we were able to place him in his recliner in the living room without too much difficulty.

    We hooked up the feeding pump, found a place to hang his drainage bag, turned on the "History of the Eagles" (the band, not the bird) on cable, and all was good. Gorgeous, sunny, warm day. Jon had new views of the back yard and patio and the street.

    Not wanting to push the envelope, we decided to return Jon to his bed after about 2 hours. We were thinking of his comfort level, pressure sores developing, cramping, pain. We intend to build up his tolerance level over the next few weeks and to graduate from the recliner to the wheelchair. Maybe by summer, we might even get a ride or two in the van. A hopeful goal.

    Jon's bed is a full electric hospital bed (head and knees elevate/lower, as well as the entire bed). We purchased it for him from an internet site 2-3 years ago. Paid for it privately, because our experience with Medicaid suppliers is "RENTAL" and "low quality." Not to mention the red tape to even get it authorized.

    After we transferred Jon into his bed, using his lift, I used the bed controls to lower Jon's bed.

    Suddenly, the bed collapsed!

    The legs at the feet of the bed were swallowed into the tubing, which house them, and the side of the foot board caved in. It was LOUD! And startling!

    Jim assessed the situation and declared, "I doubt that I can fix that."

    Thus began our phone calls to find another bed.

    I called our friend at the company, where we obtained Jon's lift in 2005 and his mattress in 2012. First shock: He no longer works with them (he's moved on and up ~ good for him, bad for us). Second shock: They no longer serve private patients, only facilities.

    The gal listened to my sad story and offered to find somewhere else, where we could purchase a bed for Jon. Meanwhile, Jim and I scoured the internet, but came up with little immediate help in our area.

    The gal called us back within an hour and said that they'd decided to provide us with a bed for Jon, probably because we are old customers (and I mean OLD! ). But they could only offer us a rental for a month, because a new bed would take up to 4 weeks to order. I need to speak to their representative to determine which bed we want to purchase for Jon. I agreed to renting a bed for a month, while we find the right bed.

    Since the delivery/service tech wasn't coming onto his shift until 5:30, I realized that he wouldn't arrive here until late this evening. Meanwhile, Jim will not get any sleep, and Jon will be too tired to get out of bed to have the new bed constructed. Plus, he needs to rest from today's lift and "outing."

    Jon's bed isn't unsafe, and his mattress is fine. So we deferred delivery and set up of his bed until tomorrow morning.

    We are so dependent upon Jon's equipment in providing his care, and when something fails, it is a crisis. If we lose power, it can become a crisis. His mattress deflates. His feeding pump stops (has a 4 hr back up battery). No suctioning machine. All of these things are used constantly, and they wear out.

    Jon needs a functional bed by Thursday, as his nurses will be visiting to change his catheter and his trache, as well as look at a potential wound developing on Jon's tail bone. As he is now, we all either have to get on our knees, or hurt our backs stooping over him. Uh ... no.

    I just give thanks today for the easiest resolution to this equipment crisis ~ that our family is remembered and cared for enough to bend the rules to serve us in our time of need. This small, full service company was gobbled up by Invacare. Hence, the change to facilities only. That's where the money is. But some of the people, who have supported our family through the years, still work there, and they couldn't turn us away. In today's world, that is quite encouraging.

    Tomorrow will be hectic. Getting Jon out to his recliner (it's a big ordeal for all of us), then getting Jon's current bed out of his room, so that the new (rental) bed (which I will disinfect) can be constructed. Then deconstructing the current bed and removing it from the house to the curb on Friday for trash pick up. (Jim thinks that it is useless/irreparable.) Then putting Jon back into his rental bed, after we learn how to use it. Not to mention the phone calls with the rep to decide which bed we're going to purchase for Jon. I'm exhausted already!

    Like I told B's mom tonight, "Didn't you read the fine print in our contracts? This is part of our job description! As mothers of children with special needs, we have to be ready for anything. And I do mean ANYTHING."

    It's just a bed. It's important, but it's just a bed. It could have been worse. Much worse. We have a solution. We aren't stranded in the boondocks.

    Just keep turning it around to see the positive sides. I'm not saying that's easy. But it does help to diffuse a tremendous amount of frustration and stress. So, I work on it. Every day.

    The bed is broken. We aren't.

    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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    Distinguished Community Member andromeda31's Avatar
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    OMG How scary for you all!!! So thankful that the company is willing to work with you!! Glad no one was hurt when that happened...I think that would have given me a heart attack! Hope you can find a great replacement quickly!!

    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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    Ughhh, oh Rose, you have had the worst luck with beds and mattresses!!!! Your description was so vivid, I felt I was there in the room with you - I would have jumped a mile!!! But Thank God that Jon wasn't injured (or you and Jim!) and that there a replacement on the horizon. It's terrible living on the edge of crisis, especially being so tech dependent and reliant on a power source for life sustaining equipment. So scary!!!! I send you love and prayers and nothing more goes wrong (this week, anyway)!!!
    xoxox Donna
    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 Earth Mother 2 Angels's Avatar
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    Thumbs up The Better Bed

    ((((((Lisa & Donna))))))

    Yes, it was very scary! I think I shouted something like, "OH NO! What was that!!!" Jim, Mr. Cool as a Cucumber, told me to relax. Jon just looked at us nonplussed. Thankfully, he wasn't hurt.

    But, as my mom, the Queen of Cliches, used to say: "Every cloud has a silver lining."

    The delivery guy/service tech, Anthony, delivered Jon's mattress and the battery for his lift last year. His toddler son's name is Jonathan.

    Anthony knows us and has a soft spot in his heart for our family. He arrived at 11:00 a.m., right on time, with an assembled bed! He just rolled it into the house!

    This bed is a high end bed used in facilities, probably. It has a different mechanism than Jon's current (and previous) bed. The supports are similar to an X. It reminds me of opening my old ironing board. All "home" hospital beds are the same, where the legs raise and lower the bed height. Anthony said that what happened to Jon's bed is common. But the rental bed doesn't work that way.

    He also told us that his company is "throwing away" the footboards and headboards for the "home" hospital beds, because they aren't serving homes any more. He said that regardless of the manufacturer, these beds all work the same way. He told us to ask the sales rep about selling us just a new headboard and footboard so that we could save money and continue to use Jon's bed, which is otherwise in good shape. Then he winked and said, "Or maybe they might just suddenly appear on your doorstep, after they are retrieved from the throw-away pile."

    This all sounded pretty good to us.

    Then we returned to check out the rental bed and put on and secure the mattress, after I wiped it down with hydrogen peroxide (even though Anthony told me it had been disinfected, which I don't doubt). We returned Jon to his bed, and the transfer went smoothly. He's enjoying his escapades, which is wonderful. But 2 hours is his maximum, as we noticed redness on his man-bits and rear end.

    Here's the thing about this rental bed:

    It's better.

    The mattress fits snugly between the head and foot boards, where there was far too much space between the mattress and boards on his other beds. What this means is something quite important: Jon does not slide down in this rental bed. He stays in place.

    This is excellent for Jon, because he is more upright, which allows for improved breathing and motility. Not to mention: comfort.

    This is excellent for us, because pulling Jon up in the bed is very hard on our backs. And when we do it alone, we stand behind the head of his bed and use the end of his fitted sheet to pull him up. This can cause the skin on his rear to shear.

    How many times a day do we pull Jon up in bed?

    Twice with both of us before Jim goes to bed.
    On my shift, I pull him up using the sheet about 4 times.
    When Jim gets up, we pull him up at least 2 times, 3 if Jim gets up early.
    After I go to bed, Jim often has to pull Jon up once before he falls to sleep, if Jon doesn't fall to sleep quickly.

    That's 8-10 times a day!!!!!

    My back and knees are about shot. Jim's right hand is crippling with arthritis and carpal tunnel. We are senior citizens, and we're wearing out along with the equipment!

    Jim and I both agreed that if this rental bed resolves Jon's sliding problem and our lifting problem, then this is the bed for Jon. We have to weigh the cost of this bed against the damage his current bed is inflicting upon all of us. What good are low cost or even free head/foot boards, if we're still going to battle the sliding?!

    I am seriously worried about me ending up needing a knee and/or hip replacement, and I don't have insurance or Medicare yet! I'm absolutely positive that those surgeries would cost us more than a high-end bed for Jon. This isn't an ICU bed at all, so it won't cost $800k!

    Tomorrow, I will be speaking with the rep to find out whether they will sell us a new bed, like the rental, even though it isn't identified as a home bed. I'm working on my speech to him. The "Woe is Us" speech.

    Silver Lining: A new bed for Jon, which will solve the sliding problem, and make life better for all of us.

    Tomorrow Jon's cath and trache change with his two favorite nurses! One is like a second mom, the other is closer to his age, and he has a crush on her. Things are looking up for Mr. Jon!

    Thanks for listening and for always being here and supporting us. We 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.

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Glad to hear things are working out! It is surprising with more people being cared for at home that companies are not wanting to sell to that market. Caitlin tends to slide down a lot when in the hospital beds but she is still a peanut (47lbs)...so lifting isn't an issue yet. Hope you are able to purchase a new bed like the rental and that Jon's nurse visits go well!

    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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    Wow, good news and bad news, eh Rose? But there is the kindness of strangers and thank God for it. Good news that this bed means you don't have to pull Jon up (I know exactly what you mean by that - I can't do it anymore, not by myself anyway, and we constantly have to do it for Nick - 50 + times per day and night). Bad news that the new bed isn't covered by insurance and is likely going to be very expensive. Well, let's concentrate on the good news and see what the kindness of strangers brings? I know that Lisa and I and others here who love you will pray! xo Donna
    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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    I do believe in "silver linings" I pray that this will work out the best for Jon.
    Mary Grace

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up A Day of Silver Linings

    ((((((Lisa, Donna & Mary))))))

    Thank you so much for your prayers! You are a blessing in our lives, and I give thanks daily for our friendships.

    The nursing visit today turned into a one hour party in Jon's room! They are family to us and such fantastic nurses. When Jon saw the younger nurse walk in, his eyes lit up! He never dreamed he would have both of them at the same time! He couldn't take his eyes off of her, and while his other nurse worked on his cath, the younger nurse held Jon's hand and chatted with him. That is one deep crush he has going on there!

    Smooth as silk ~ cath and trache change both. Jon was so relaxed and cooperative. We were laughing and joking and singing and dancing. Really!

    The spot on Jon's tail bone does warrant treatment, and the nurses praised me for choosing the right option of a foam pad a few days ago, when we noticed it had deepened. I've learned quite a lot about wound care from these and other nurses through the years, so I was able to remember what worked best. Jon's sweetheart specializes in wound care. His other nurse specializes in IV's. Of course, they both know everything about everything too!

    She also told me to continue soaking Jon's toe in betadine daily, and suggested an over the counter ointment which treats MRSA. When Jon's toe was inflamed last year at the hospital, a podiatrist removed the ingrown nail. The swab of the toe showed MRSA. She also gave me the name of a podiatrist, who makes house calls! Jon's toe became infected last year, because our podiatrist suddenly didn't like our money (we paid privately). I even offered $100 extra!

    Jon is tolerating his new trache very well, and he's peeing perfectly with his new catheter. Success! YAY!

    Finally talked to the sales rep about the bed, and I didn't need to give my speech. I did explain why the bed is better for Jon and us. He was ready to sell us one, before I said, "Hello." He asked us what kind of bed rails we wanted, so I handed the phone to Jim. Gee, that felt so good ... handing the phone to Jim! Let him handle this situation; one less for me!

    He said he would call us on Monday with the "figures." I think I'm going to imagine some ridiculous, outrageous price, so that when he tells us, I'll feel relieved.

    Donna ~ 50+ times a day?!?!! I cannot get my jaw up off of the floor. I probably wouldn't be able to get up at all, if I had to do this that many times a day! YIKES! Maybe you need to attach some velcro straps to the back of his shirt! Want me to ask the sales rep if he'll send you a bed like Jon's?

    Lisa ~ The problem with home sales is that most patients are Medicaid, many are not long term care but hospice, and rentals are preferred. There just isn't enough money to be made. And paying privately is quite rare. We save for these kinds of expenses. We don't travel/vacation/go out to dinner or movies/theater, etc. We drive an old van. We know how hard it is to get what Jon needs through Medicaid, and we just can't deal with the months of begging, then being told we can't have that particular kind, but another cheaper, unsuitable kind.

    Since we are considered a small business, we are able to deduct the things we purchase for him as business expenses. That helps ... a little. (Your and our tax dollars at work in our home! )

    Mary Grace ~ It's the silver linings, which keep me afloat during the flooding storms of life.

    Thanks again to you all ~ know that my prayers are with you always.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 03-28-2013 at 06:29 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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    Hi Rose, I'm so glad you had a bedroom party with your nurses you love and that your sweet Jon is peeing with the new catheter!!! Maybe if those bed vendors go to church on Sunday, they'll have love in the heart and will give you 90% off the going rate for the bed. You never know. Fingers crossed and prayers going up!
    Nick is not as bad now that his pain is more under control, but when he was younger, you would just get positioned on his left side and he would go to say something or he would get a twinge and over he'd go on his back, all the time he moved like that, he would slide down a little more. So it was basically every 15 or 20 minutes that he needed hiking up and now it's about every hour, so not 50 anymore, but it used to be. That's how I hurt my back. I just went to the doctor yesterday for a prescription for physio and massage - my right arm is constantly numb and tingling - it's from my neck. Anyhoo, the woes of a Mum, eh, Rose? Happy Easter my friend. xo Donna
    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


  10. #10
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    ((((((Donna))))))

    Ouchie! I will pray that physio and massage therapy will relieve you of your pain, numbness and tingling.

    From your description, I can certainly see how you would have to lift Nick 50 times a day/night. Wow! I can also understand about the pain in your neck (no pun intended there at all) from that kind of repositioning of Nick. Jon leans to one side all of the time, so I pull him over to mid-bed about every half hour, and I feel that in my neck and shoulders.

    The rental bed doesn't mitigate that rolling to the side problem, and we use pillows, rolled towels, anything we can concoct to keep him propped up, but it's to no avail. Now, we have noticed that the rental bed does have a gap at the top of the mattress and headboard, likely because we have returned the mattress to therapy mode, so it isn't as expanded as when we first put Jon on it.

    Still, it is a significant improvement over the broken bed, and worth the investment as the last bed we should ever have to purchase for him.

    We have learned the hard and expensive way that a) buying this kind of equipment over the internet is a mistake, as there is no service associated with the product, if it breaks/fails; 2) you get what you pay for.

    A 90% discount would truly be a miracle! I'm not expecting that, but a cash discount would be nice, since they won't have to wait for payment, like they do with insurance companies, Medicaid/Medicare, or facilities. They know that we're good for it, because we spent a wad of money last year on Jon's new mattress system, as well as service and batteries for his lift. Unlike facilities, we are non-profit. Perhaps that will help bring down the cost too.

    We have this perspective ~ Jon needs it, he gets it. We never bought him a car, or paid for his college tuition, or contributed to a wedding, or showered him and his children with gifts on every occasion, or gave him money toward the purchase of his first home. Instead, we buy him mattresses and beds and lifts and movies and whatever he needs to have a comfortable life.

    He needs a new bed. I hope we don't have to take a second out on the house to pay for it, but if we do, then we will. We won't have to, I'm sure.

    Meanwhile, we have to figure out what to do with Jon's old bed, which currently remains in Michael's room. It's broken, so we can't donate it. We already have two hospital beds disassembled in our garage! And the pumps and mattress cells of 4 mattresses! Not to mention ... three wheelchairs. Oh well, I'll think about that later.

    Happy Easter to you and your beautiful family!

    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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