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Thread: CN Central: AUGUST UPDATES!

  1. #11
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    ((((((Hugs to All)))))) ~

    Well, it's been 10 days since I started this thread, and we still have no word on the Medical Director's decision. Next week, I'm going to call the woman with the nursing service's pharmacy, who is advocating for reinstatement of Jon's Vivonex. I just want to know whether any progress is being made, or if there is something that I can do to get this moving.

    Today I learned that a Medi-Cal patient in the nursing service was denied home health nursing. She is dependent upon IV infusions, which are "life sustaining." They didn't just cut off her infusions. They cut off home health nursing altogether.

    Please wake me up from this nightmare.

    I could write a thick book just about all of the ways that Medi-Cal has messed with my sons through 30 plus years (prior to that we had private insurance, an HMO, now defunct, for good reasons, so that wasn't a picnic either).

    But this, cutting off his nutrition, is the ultimate. And I knew Jon wasn't alone in being denied vital services. This is one of those times, when I hate being right.

    Please keep those positive vibes going that the Medical Director will reverse the decision, and I won't have to file for a Fair Hearing. Thank you ~ we are so grateful for your support and love.

    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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    Rose I'm so sorry this has not been resolved! It's just so unbelievable that it isn't considered an emergency type decision. I'm sorry that the general public doesn't know about all these "hoops" a parent of a disabled person has to jump through, and the stress it causes on a daily basis. I wish I could help dear friend! Powerful prayers that this will get resolved very soon. Thanks for keeping us posted.
    Mary Grace

  3. #13
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    Thumbs up It's over!

    ((((((Hugs to All)))))) ~

    This morning, I called the rep handling Jon's formula re-instatement, and left a message for her asking for an update on the status of Jon's case. She returned my call after 5 p.m. tonight, and left a message for us that Jon's Vivonex has been renewed/reauthorized from August 24 to January 24. At that time, we'll have to submit documentation for another 6 months coverage.

    Tomorrow, I will call the rep to thank her and get the details. For now, a burden has been lifted off of our shoulders, and we are celebrating.

    Two days ago, Jon's right knee was so swollen and painful that he wouldn't allow us to turn him. We feared that he could have a fracture, sprain, strain, torn ligament. We applied Witch Hazel and wrapped his knee in a compression bandage, and by yesterday morning, Jon was able to be turned without pain. We are continuing this therapy, with agreement from Jon's PT, and Jon was able to be turned today without pain. This confirms clinically that the problem is fluid/lymphedema. We hope it continues to improve, which would further eliminate any other possible cause for the swelling.

    We are so grateful for these blessings.

    Thank you all for your support, love and prayers.

    Smoothies for everyone ~



    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.

  4. #14
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    That's great news Rose! Big cause for celebration. Curious as to how Witch Hazel works for Jon. Happy it did, but how? Always looking for more natural ways to help Tyler. Hard to see them in so much pain.

    It is absolutely amazing you have to justify getting formula for Jon. Like the average person wants formula at his age? Really. What a waste of time and energy. They just don't get it do they? Total incompentence on their part.

    Tyler has an EEG/bloodwork on Monday and a CT scan on Wednesday. We did not increase Tyler's Dilantin to 400mg a day. Getting his blood levels done and then we decide what to do. Got the prescription for liquid Oxycodon and then read the warning sheet. Not great for seizures. Can cause or increase seizures. That took care of that drug. Back to Motrin.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  5. #15
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    ((((((Tamie)))))) ~

    Witch Hazel is a natural anti-inflammatory, and when applied topically, it reduces swelling and bruising. I used it when I sprained my ankle, strained my knee, and broke a rib (not all at the same time!), and when I stub a toe or knock into something, where I know I'll have a bruise. It really works!

    I don't know how it might help Tyler, but if he has joint pain or bruising, just soak a paper towel in Witch Hazel and apply it directly to the area. Tape it and leave it on as long as you can. Re-soak the paper towel after it dries out.

    Unfortunately, I didn't have a chance today to call the home health rep to get all of the details on the resolution to Jon's formula issue. I did speak to Jon's doctor's assistant today, and she told me that Jon's doc wrote a detailed letter to Medi-Cal regarding Jon's need for his formula. She's going to send me a copy.

    She called me because Apria has given the doctor a new form (after 5 years of not having to answer these questions, while they've been providing the O2 concentrator). The form asks what Jon's SATS are at rest and after exertion. Well, today, they are 95, and Jon never exerts himself, so that isn't applicable. But if I say 95, they will take the O2 concentrator away.

    So, I told her that we put Jon on O2, when his SATS are 86 or lower, and she's going to use that number. Jon isn't O2 dependent, which is typically the reason for a concentrator. But when he needs O2, he needs it!

    Reviewing Jon's chart today, I noted that he's been on O2 three times this year, for 2 days each time. O2 tanks wouldn't accommodate that need. Last year, when he had pneumonia, he was on O2 for a week.

    And, if we didn't have the O2 concentrator on those occasions, when he's needed it, we would have ended up in ER. That means ambulance transportation, ER, maybe admittance to Step Down, and all of that is quite expensive! Renting an O2 for home use is far more economical and better for Jon and our family.

    That may be the next hurdle awaiting us. Denial of O2.

    I want the System to realize that you and Jerry and Jim and I provide 24/7/365 acute care, which would cost a fortune in an acute care facility, and which we both know wouldn't provide the care Tyler and Jon need.

    In order for us to provide acute care to Jon, we need to have everything in place for him, which includes an O2 concentrator. If he was in a facility, he probably wouldn't need O2 any more than he has this year (well, maybe he would, because the care would be poor; he probably would become oxygen dependent). The point is that if he was in a facility, that facility would have access to O2, if Jon needed it. And suctioning. And breathing treatments. And G Tube feeding.

    So, why shouldn't he have access to all of that in his own home?

    But I'm being too logical for The System, which steps over dollars to pick up dimes.

    Oxycodone ~ I'd be afraid of that drug too, for the same reason, as well as its addictive quality. You are wise to hold off on the Dilantin increase until you get the blood test results. You can compare his level to his previous blood work to get an idea of a trend perhaps.

    I'll be thinking of you on Monday and Wednesday and sending positive energy and healing prayers. Please keep us updated.

    Praying for answers and a remedy!

    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
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    Hi everybody, I had a good week with people giving more good feedback on my writing and seeing friends I have not seen for nearly a year. I will be without internet for the next few days(going somewhere with no internet) so if anything big happens on your ends and I don't reply right away that is why.

    Rose, I'm SO RELIEVED that mess with the formula is OVER! Thank God! So the O2 device Jon uses are different than the at home systems I see advertised on TV?? I know for a fact that facility care is way more expensive than home care so I agree.

    Praying for you Tamie!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Rose, Celebrating your success! Sorry it has to be so difficult so glad you got it done. Praying the next step goes through without complications. I love the Witch Hazel idea I didn't know that. I probably read it at some point but forgot.
    Funnylegs, So glad you had a good week with positive feedback!
    We're doing well here. A little less than 2 weeks and back to school. I'm looking forward to babaysitting again too. I have a 3 month old baby coming along with his 3 year old brother. Kathleen loves babys so she'll love seeing him here after she gets home from school. We had a stretch of very hot vey humid weather. Couldn't get Kathleen outside except for a swim. This week is a bit better and she's gotten some bike rides early in the AM. Last week I took Kathleen to Saratoga Race track. We didn't go for the races, we went early in the morning and watched the trainers workout with the horses. They are such beautiful gentle animals. Kathleen LOVED seeing them. Some stopped by to say hi to her. We were allowed into the "winners circle" and she got to stand on the scal they use to weigh the jockies and she got to ring the bell they use to signify the start of the race. We had a grat time. I'm way behind on getting my pictures onto my compuer but when I do I'll post some. Last night we went to an open air theater and saw a play, the Little Mermaid. There were some very talented kids in most of he parts. Very fun! We broought a picnic dinner and din't get home till 11pm.Luckily she slept in a little this morning, of course I was up at the same time as usual...
    Mary Grace

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    Sounds awesome Mary Grace! I meanwhile have access to the internet again.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  9. #19
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    Thumbs up

    ((((((funnylegs4)))))) ~

    I'm so happy to hear that you're receiving positive feedback on your work. You are pioneering! Keep it up!

    And how wonderful to connect with friends you haven't seen for awhile. I hope you had lots of fun catching up.

    Jon uses an O2 concentrator, which is a large machine. It looks like this:

    Screen Shot 2016-08-28 at 10.45.48 PM.jpg

    He uses a trache mask over his trache to deliver the oxygen. It looks like this:

    Screen Shot 2016-08-28 at 10.47.36 PM.jpg

    The little bit at the end of the tube of the trache mask is what I've been trying to get from Apria for Jon's masks. Never got it. So I ordered these masks from Walgreens at $2.10 each, and they came with the adapter.

    In finding these photos, I discovered that we can buy an O2 concentrator for Jon for about $500. I wonder how much Apria charges to rent it every month. By now, Jon could have owned probably 4 or 5 concentrators! It's outrageous!

    Thank you for your prayers and support through the feeding ordeal. One less stress for us!

    When do classes start for you? Hope you have a fantastic year!

    ((((((Mary Grace)))))) ~

    I can picture your day at Saratoga Park with Kathleen, and it brings so many smiles and happiness to my heart. What a wonderful experience! With the exception of the heat and humidity (ugh!), it sounds like you and Kathleen have had a terrific summer.

    A 3 month old and a 3 year old! They ought to keep you on your toes! How blessed those children are to be in your care.

    Thank you for your support and prayers too! It means everything to us to know that we are not alone in our battles.

    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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