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Thread: What Is Next For Jonathan?

  1. #11
    Distinguished Community Member agate's Avatar
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    Rose, I hope you'll write that letter. It seems very wrong that things are being made even more difficult for people in an already complex and difficult situation. And I hope that the letter gets some results.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  3. #12
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    ((((((agate)))))) ~

    Today, I spoke to Jon's Medi-Cal case manager, and she explained to me the reason why Jon's supplies were no longer being provided by his home health agency: the agency is not a DME, and Medi-Cal refused to pay claims.

    So, it was not the new Director's decision to terminate patient supplies from the home health agency. It was Medi-Cal.

    No letter to the Director now.

    Medi-Cal Case Manager regarding the 100 ml saline bottles vs the 250 ml saline bottles:

    "Well, you could open the 250 ml bottle, and pour it into sterile urine collection cups. Then each time you opened one of them, you would have sterile water."

    My response:

    "Okay. First I have to get a supply of sterile urine sample cups. Then I have to find a place to store them. And the 250 ml saline water bottles. Then, I have to retrieve both, set up a system whereby I pour water into each. Then I have to find a place to store them.

    Do you understand that I work 20 plus hours a day, sleep for maybe 3 hours a day, take care of Jon and my husband, and the house, and the errands, laundry, everything?

    Why should I have to be pouring water from a 250 ml bottle into urine sample cups, when I can use 100 ml bottles as I have been for years? Let's just add more for me to do. It may seem minor, but if you'd like to come over and spend a day or two with us, you'll soon find out that anything extra is not minor."

    This case manager is an RN, but even she doesn't "get it."

    Given today's Executive Order about health care, I don't know what is around the corner for us. But I can't worry about that now. I have to fight the battle before me first.

    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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  5. #13
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    ((((((Hugs to All)))))) ~

    Jon has been in very good shape recently, given all of his challenges. Urine and bowel output, vitals are all excellent.

    Heís sleeping fairly well, although he has the residual restless limbs from Reglan, which he was given in 2005, against my warning, after his colostomy. He flails his arms and bangs his hand on his mattress, while heís winding down to go to sleep and while he is sleeping.

    We have to restrain his arms with wrist restraints to prevent him from injuring himself. Nonetheless, heís able to throw on the floor his top sheet, his hankie, and his colostomy bag, which he can somehow remove. Sometimes, he manages to throw down his two side pillows, which we use to attempt to keep him upright in bed. Then, he ends up twisted, with his head against the bed rail, and I have to pull him over to center him in the bed.

    This is how I spend the hours of midnight to 3-4 a.m. every night. The only light in his room is from the kitchen and a flashlight, because Jim is sleeping in the living room.

    Jonís new supply vendor came through with his supplies last week. I had to do some negotiating, but I prevailed. For the first time ever, the bill of lading given to me indicated the cost of the supplies. I am stunned. It is obscene that these medical necessities are breathtakingly expensive. The Durable Medical Equipment industry is not regulated, so a vendor can charge whatever they want to charge.

    The question is whether MediCal will pay the full bill. Iím guessing that they will not pay the full bill, and I will have to enter into a ďtake the crap we have, because weíre losing money on the special order stuffĒ mode with this vendor. Been there, done that, have T-shirt, mug, and all other merchandise Ö

    If we get a new healthcare bill, and Medicaid is issued through block grants and caps on benefits, I am positive Jon will receive substandard supplies in sparse quantity.

    Trache Change

    On Friday, 10/27, Jonís nurse will visit to change Jonís catheter, and we will again attempt to remove and replace Jonís trache. If we are unsuccessful in changing Jonís trache, Jon will have to go to the ER, be seen by a Respiratory Therapist, and possibly a pulmonologist, have tests perhaps, maybe even surgery, if the problem is internal granulation or scar tissue.

    Iíve researched granulation tissue and found several suggestions from mothers of children, who have G Tube stomas with granulation. Michael had this, and I used eucalyptus oil on it, but Iím not sure that would be safe for Jonís trache. Iíve begun implementing a safe option, which is a gauze dipped in warm salt water and applied to the stoma. Iím praying it will reduce the exterior granulation tissue enough to allow us to remove and replace his trache.

    The last thing Jon needs is to be lifted onto and off of an ambulance gurney 3 times to go to ER. The gurneys are narrow and hard, and ER beds are also very uncomfortable for Jon. An x-ray can be done at ER bedside, but any other test, like a CT scan, requires more lifting and jostling.

    For those of you, who have never ridden in an ambulance (I give THANKS!), I can tell you that they have the worst suspension of any vehicle Iíve ever been in, and that includes a semi and a dune buggy. And imagine how it feels to be pulled out of the ambulance into the bright sun, then wheeled across a bumpy parking lot at the hospital when we arrive/leave, or our street, when we leave/get home.

    I just do not want Jon to have to endure all of this, when he is not ill and in need of hospitalization. Thatís different. Thatís urgent and life threatening. This is not.

    Jim will not be able to go with us to ER, because we have to keep him away from sick people and germs. Of course, Jon and I will be exposed, and if we get ill, Jim will too.

    Please send positive energy that weíll be able to remove and replace Jonís trache and avoid the ER. Thank you so very much!

    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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  7. #14
    Distinguished Community Member agate's Avatar
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    I can certainly understand wanting to avoid a trip to the ER. I'll be hoping that you can successfully do this procedure.

    Yes, isn't durable medical equipment ridiculously pricey? I've noticed it for a long time now. They're charging whatever they can get away with charging and trusting that the insurance will pay them without any questions, I guess.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  9. #15
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    ((((((agate)))))) ~

    Thank you for your positive trache change thoughts!

    DME's, like pharmaceuticals, are outrageously priced, with no federal regulations to control costs. Profit is one thing; gouging is a whole new ball game.

    My boys required custom wheelchairs, and we were always told by the therapist and vendor that the cost of the chair would be $X, but MediCal would only pay $Y. Hundreds even thousands less than the quote submitted by the vendor. Jim and I looked at the prices for each item on the chairs. Vendor was charging $150 for a seat belt that would cost $20 at the nearby auto store.

    Then, there is the MediCal policy of renting equipment rather than buying it for the patient. I guess they are counting on the patient dying. That's why we've bought Jon's mattresses and beds, because rental equipment is always shoddy, worn out, and out of date.

    Before a vendor can sell something privately to a MediCal patient, MediCal must be contacted and refuse to pay. I always tell the vendor, "They will definitely refuse, but the law is the law. If they agree to pay, I'll need two beds. One for me."

    I've fought this battle for many decades. Nothing changes.

    But at least Jon has a good amount of supplies on hand now. And I'm thrifty.

    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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  11. #16

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    Dear Rose,

    It’s unfortunate that the DME providers are allowed to get away with what they do.

    Sending up positive thoughts for Jon and his trache change.

    Hope you are getting some sleep.

    Marcie

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  13. #17
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    Insurance and mobility or medical equipment buying is insane. Most people I know are either forced to pay out of pocket or do without. :( How was the trache change?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  15. #18
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    ((((((Hugs to All)))))) ~

    Thank you Marcie and funnylegs4.

    In addition to big ticket items, like Jon's bed and mattress, we also buy our own gloves (by the case), small stuff like alcohol swabs, paper tape, 100 cc leur lock syringes, and underpads. Jon uses Cair underpads, which are breathable, to protect his vulnerable skin as well as to maximize the air mattress.

    Trache Change

    Well, it was cancelled yesterday, because Jon's nurse had 2 infusion patients, then had a 2 hour mandatory meeting at the agency, because the agency has a new director, and things are changing (eg., no more supplies for Jon). She likely wouldn't have arrived before 5 p.m., and then she would have had to rush with Jon to get to yet another patient.

    This agency is working these fantastic nurses into the ground. That's why there is a high turnover rate. Jon's nurse just turned 65, and I don't want her to be stressed any more than she already is. Driving through rush hour traffic to get to us, then not having enough time to carefully address the trache change. Nope.

    So, we're on for Tuesday (Happy Halloween!) at 2 p.m. She'll do her best to slot enough time for Jon before her next patient. But given recent history, I expect the agency to tack on two more patients for her that day, as they do just about every day she works.

    I am praying A LOT, trying to Let Go and Let God, and to remain calm and positive that we can change his trache without any complications.

    We're watching the World Series, and today, our Buckeyes beat Penn State by ONE POINT! What an exciting game! It exhausted me! Penn State was ranked #2, and we're ranked #6. So, this win should earn us a slot in the top four, which means a possibility to play for the national championship. The Buckeyes won the first playoff championship a few years ago.

    Also, Jon's birthday is approaching on November 7, so we decided to give him some early birthday gifts this weekend. Blu Ray movies to add to his vast (and I do mean vast) collection. I bought him a stack, and so as not to overwhelm him, we dole them out over a period of a week or so. We do this at Christmas too. It's more fun for Jon to get a present every day than a bunch of presents in one day.

    I decorated Jon's and Michael's rooms with Fall colors and fake pumpkins/gourds, as well as Halloween knick knacks. I took breaks, as this requires a good amount of standing. I was determined to get it done, because it's a fun thing that I can do for both of them. And I love the Fall colors, the scattered dried leaves and raffia and candles. Now that the weather is cooling down, I'm more in the mood. When it's 110', it doesn't feel like Fall.

    Tomorrow, I pay bills, clean house and do laundry. I've had my day of "rest" today.

    Thank you for your prayers and positive energy. Knowing that you're with us sustains me.

    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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  17. #19
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    Hello dear Rose and dear friends, old and new. Rose, I wanted to check in to see any latest news on Jon's trache - hoping for the best and praying. Rose, I was thinking that maybe silver nitrate could work for the granulation around Jon's trache to create more space? Sending you, Jon and Jim all the love in the world! 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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  19. #20
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    ((((((Donna)))))) ~

    It's great to see you here!

    I've always avoided silver nitrate, based upon the experiences of many Moms on the various G Tube forums to which I've belonged through the years. The consensus among them was that silver nitrate caused pain/discomfort, as well as bleeding. We were successful in keeping Michael's G Tube granulation at bay using eucalyptus oil. But, I'm a little nervous about using eucalyptus oil around the trache stoma.

    And, I am nervous about silver nitrate, because I've never used it and don't want to risk doing it wrong. Jon's nurse doesn't have experience in using any of these techniques for granuloma.

    It is so disappointing that there are no home health Respiratory Therapists. I can't believe that there isn't a need for RTs, who make home visits.

    For the past 6 years, Jon's trache has come out so easily. In fact, when the collar is undone, he coughs, and it flies out on its own. We changed it 3 months ago without any difficulty. How could it become lodged in that short amount of time? He's always had granulation around his stoma, and it doesn't appear to have grown. It's perplexing and frustrating.

    But here we are. We take it as it comes. What else can any of us do, really?

    Thank you for checking in here, Donna, and as always for your love and prayers.

    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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