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Thread: CN Central: JANUARY 2016 UPDATES!

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    Thumbs up CN Central: JANUARY 2016 UPDATES!


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

    So, here we are on the other side of the holidays. We made it! YAY!

    And do we all agree that it is a lot of work, effort, and albeit lovely and joyful, tiring? Can I have an "Amen" to that?

    Our tree and all of our decorations are still up. And they may be up for a long time. I don't know. I'm not going to worry about it. And every morning, we turn the lights on in Jon's room and on Michael's Christmas tree. We're still doing the holidays here.

    And Jon is still receiving gifts! Yesterday, we gave him the Eric Clapton concert DVD, Slowhand at 70. Even at 70, Eric Clapton is still the consummate guitarist.

    Moreover, I still have presents to wrap to give to our dear family-friends in honor of the baby girl due any moment now in their family. They were delivered after Christmas, and I've yet to wrap them.

    I need the holidays to be over, so that I can return to fretting over other things!

    Jon's nurse will be here Friday to change his catheter and draw Dilantin and Depakote levels. Jon isn't falling asleep until the wee hours of the morn ~ like 3 a.m. and today 4:30 a.m. Then he sleeps until 10 or 11 a.m. So, we must factor that into the timing of her visit. And we need a trough level, which is usually done between 8:30 and 9:30.

    We've noted traces of blood in Jon's urine today, which is bad timing for a cath change.

    Jon's last dose of MOM didn't work, but we sent in the Tiny Miners today (enema) and now have some results. His vitals have been excellent.

    We tried to make an appointment on line today with the DMV for Jim to renew his license, but all available times were their busiest times, and we want Jim to go there when they open and be the first in line. Dreading this. Hours on line in a building with a bunch of people ... flu/cold season ... not good.

    Here's what Jim is receiving for his 68th birthday:

    A cardigan (rather than pull over) sweater, because he can't raise his arms without pain, and he is cold all of the time
    Tommie Copper gloves and elbow sleeves (for compression)
    An electric can opener
    A fresh tin of his special Matcha green tea, which he drinks before bedtime

    Do we know how to party? Eh?

    Every day a new beginning.

    Wishing everyone a very healthy and happy new year and hoping that you will all stop by periodically with updates.

    Your Smoothies are waiting ~



    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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    Hi Rose, hope the blood is Jon's urine was resolved and all is going well.

    UPDATE ON MY END: There is flooding that may be heading to our area. My teacher's (the one with the stroke) home may have the storm worst than mine. Can you all do me a big favor? Please pray that my teacher gets through the storm okay?!!! He has diabetes and other health issues that make him dependent on medication to live. If the flooding or weather were to be very bad and he did not have access to these meds he could possibility die within hours without the meds. I had no idea how medically fragile he was until he voiced this to me after the stroke. I told him to be careful and I know he knows how to handle himself because I'v seen how well he handles things. I'm guessing he has some emergency stash of his medical supplies. However please pray just in case???! He's been through so much already. He doesn't need more trouble. This was exactly what I was concerned about when I voiced that rant about disaster preparedness for diabetics to Rose.
    Don't worry I'll be fine but I may be offline for a few days. I'v unfortunately dealt with this kind of weather before so I have a good plan. ugh.
    Last edited by funnylegs4; 01-22-2016 at 05:30 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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

    Prayers are on their way that you, your teacher, and all around you are safe during this impending major storm event/blizzard.

    You and he might want to notify the police and fire departments in advance that you have conditions, which might require help for evacuation during a disaster. This was suggested to us recently, and it's a good idea, so that rescuers know the locations of individuals, who might not be able to escape or fend for themselves.

    I'll look forward to your post, when it's all over, assuring us that you and your teacher are okay.

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

    So far, 2016 rates a C (possibly a C-) in my grade book.

    While Jon has been steady in his vitals and general wellness, he is still constipated and filling up with fluid (lymphedema).

    We are still waiting on news about the change in the spike sets for Jon's G Tube formula. I have a feeling that we're going to end up using an adapter, because the corporation providing Jon's nutrition has already changed everything without patient input. We used to hang one 1500 ml bag of formula, with one spike set per bag, lasting 24 hours. Now, 1500 ml bags are gone, and we are given 1000 ml bags ~ so we hang 2 bags/day, which means reusing the spike, and priming the pump twice a day, which is wearing out the pumps. We are on our fourth pump in less than a year.

    Jon's alternating pressure low air loss mattress finally gave out. Jon now has a loaner mattress and pump, while his mattress and pump are being repaired. It's a long story, and I'll spare you. Let's just say that this has been strenuous for us in several ways. We're waiting for appraisals to repair or replace Jon's mattress system. And, of course, we're paying for it, not insurance, which is fine, because we know this is what has to be done for Jon. It's not like we're saving up to buy a Mercedes or for a vacation in the Bahamas.

    And, as far as the government is concerned, we aren't a family home, we're a business. I do my best to ensure that those who provide services to Jon know the distinction.

    Jim failed the vision test to renew his driver's license. The cataract in his left eye has to be treated now, no way around it. That likely means surgery. And surgery means that Jim will be restricted in his activities, which translates to no lifting and turning of Jon for at least a week, probably longer.

    I am able to lift Jon in his bed, standing behind the head of his bed, using his bottom sheet to pull him upward toward the head. I can pull him over to the center of the bed. I cannot turn him, and tend to his needs on his back (cleaning, creams, dressing changes, etc.) while holding him in safe position. I am not strong enough to turn him. And Jim struggles to turn him now. He can't be doing that after cataract surgery.

    A realistic question is "how many days can I do all of this, before I have a serious problem with my back, hip, knee, shoulders, etc.?"

    We have 60 days to figure this out.

    Jim says, "We're getting older, honey, and these things are bound to happen."

    Indeed.

    I guess we'll just see where 2016 leads us from here. I may just leave up the Christmas decorations at this point. I don't have the energy to take it all down, and if I blink, it will be Christmas again.

    I'm looking forward to upgrading 2016 to a B+ as the year goes on. I live in Hope.

    Many prayers for all of you, particularly those of you affected by the blizzard.

    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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    Oh Rose I'm sorry things have been so stressful! I so wish I could help you out! I will keep prayers coming that the year will take a turn for the better. Please keep us posted. Insurance can be a real pain to deal with... We've had an MRI scheduled for Kathleen for a few months (it takes that long to get a sedated MRI) on Saturday (of course a day you can't call anyone for information) we go a notice that it was denied. Our insurance co. is now outsourcing their medical necessity reviews (hat's a whole other issue that's got me so angry). I know for a fact that our neurologist's office can't make the MRI appointment without approval. I've contacted both the neurologist and insurance and I'm waiting for calls back of course. I hope it can get straightened out in 2 days! If not we'll have to wait another few months at least and reschedule other follow up appointments. Just what ai wanted to do on a Monday morning.
    Mary Grace
    Mary Grace

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    UPDATE ON ME: The storm wasn’t too bad. No power outage or anything like that. Just a bad internet connection that still cuts off every now and then. My family,friends etc and I are fine. I heard from my teacher and he assured me he is also fine. Thank God! I’m relieved the weather wasn’t as bad as they were expecting where he is. For awhile the news said it was heading straight for him but God was watching over him once again. We are both stuck inside for now because of mile high slushy snowy gunk but hopefully he can use it as a time to take a day off work and rest. I just hope he doesn’t try to shovel without help. I wouldn’t necessarily put it pass him to be stubborn enough to try...

    Rose, Excellent idea! I’ll let him know. A couple of times people actually suggested I get something like “Life Alert” you know, like on the TV ads for old people just in case I needed some kind of emergency help. I wonder if something like that would be useful for diabetics and people with epilepsy or not?
    I’m sorry Jon and Jim are having health issues. What is a spike? Why the heck does the govt think you are a business? I’m particularly sorry about Jim’s possible eye surgery. I unfortunately understand the fear of your lifting and/or turning Jon by yourself. As I told Mary Grace in the other thread, awhile back when my teacher had one of his dizzy spells, he looked up at the ceiling with his mouth half open and then his eyes shifted back and forth super fast. I thought it looked like a seizure or the beginning of one. I honestly didn’t know anything about what a seizure or partial seizure looked like so I was very afraid because I was completely alone with him and feared I might have to move him to protect him from injury. The classroom was full of hard metal type objects that he could have injured himself on if he fell or seized. I have lifted someone of his size with Cerebral Palsy. In that case my CP friend got stuck on the floor and I had to lift him. I have the arm strength to lift but my balance is bad enough that I was terrified I would drop my friend. Luckily my friend told me exactly how to stay balanced while helping him. But I wasn’t sure if I’d be able to help my teacher if his spell got worse. I was ready to call 911. He got very pale like he was on the verge of passing out. I thank god I was there in case he had passed out. I don’t know if anybody would have found him in time if he had passed out. Luckily he never did pass out. It was AWFUL to watch him struggle because I couldn't stop what was happening. I felt very disabled and completely physically useless. It sucked! I have always had the fear that someday someone will need physical help from me that I can't provide. I wish I could come over there and help you with Jon! :)

    Mary Grace, I hope you get the MRI and insurance thing cleared up ASAP. Thanks for your explanations in the other thread! I think you are right! I get it now. Yes it's harder for an adult to adjust. I think it is way harder for someone to adjust to disability later in life than be born with it and I don't feel this subject is talked about enough! I'm very glad my teacher did not have a major personality change. If anything the stroke made him even nicer i.e more patient. Can a stroke make you nicer? LOL. I think your husband's grey hair was from stress given the situation. Can the surgically created vessels be effected by the moyamoya too?

    Thank you both for your prayers!!!! I know they helped!

    This post used to be longer but my stupid computer deleted part of it because of my bad internet connection and the auto save had not saved it. Sorry for any further errors.
    Last edited by funnylegs4; 01-25-2016 at 05:09 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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

    Mary Grace ~

    Did the insurance company give you a reason for denying Kathleen's sedated MRI? She's had them in the past, hasn't she? Were you with the same insurance company, when she's had her other sedated MRIs? Your insurance company has paid for many things for Kathleen, I would imagine (like her surgeries?), so what is their beef with a sedated MRI?

    Is there an appeal process, because you should raise high the roof beam on this one, Mary Grace. I would use the word "discrimination" in an appeal too, because that's what they are doing to Kathleen by denying her a sedated MRI.

    I'm so sorry that you have to go through this bureaucratic baloney. I hope you are able to get this resolved very soon without too much hassle.

    We don't bother requesting "big stuff" from Med-Cal, because we know what we'll get, and it will be substandard. So, we've been buying Jon's equipment (bed, mattress, top of the line pulse ox, etc.) for years. He had an alternating pressure mattress about 12 years ago, which failed, and instead of replacing it with another alternating pressure mattress, Medi-Cal sent him a static mattress. He needs the alternation to avoid skin breakdown. Also, they generally rent, rather than purchase, equipment like beds and mattresses. That's when we took over buying his equipment.

    So, we're not dealing with insurance on Jon's mattress. We are dealing with the company from which we purchased the mattress in 2012, and which is providing the loaner mattress and pump for Jon, while we wait for the part to come in to repair Jon's mattress.

    Please let us know how things turn out with your insurance saga.

    funnylegs4 ~

    I'm so glad that you, your family, friends, and your teacher are all okay after the Jonas storm. I'm grateful it wasn't any worse, and that it's passed now.

    A Life Alert button is good for folks, who live alone, but also for folks, who have medical conditions, where they might have an emergency and need help. A cell phone can serve the same purpose, but you have to be sure that you have your cell with you/on you at all times, and that it's charged, and that you can get a signal.

    The Spike Set:

    Jon's Gtube feeding formula is contained in a plastic bag, which we hang on an IV pole. The Spike Set goes into the bag of formula at the bottom of the bag. It has a long tube, which is wrapped around a mechanism on a pump, which turns the tubing to dispense the formula a few drops at a time.

    The other end of the spike set has a connector, which goes into the port of Jon's G Tube (which goes into his gut, via a stoma).

    The manufacturer has changed the connector on the spike set, and it is too large to fit into Jon's G tube. If they have discontinued making the old spike set, then we'll have to find an adapter to Jon's G tube to feed his formula to him.

    Clear as mud, eh?

    The government thinks we are a small business, because Jim and I are Jon's paid caregivers through government programs, which serve Jon. We are "vendored" to provide his care. So, we pay small business taxes on our income, as well as personal income taxes.

    Thank you both for wishing you could help us! But Jon is 6'1" and weighs about 160, so turning and lifting him would probably be very difficult for you!

    We'll figure out something. We'll have to figure out something.

    Smoothies anyone?



    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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    I called Kathleen's Dr. and he got the denial reversed. Thank god I did not want to have to go through an appeal... So we're good to go tomorrow morning.
    Funnylegs, Glad the phrase made sense now. I totally believe any health issue as severe as a stroke can either make you a better person or a bitter person. Your teacher choose better. I know from our experience that we too have more patience, we take one day at a time, we don't sweat the small stuff, always treasure our good health, and we celebrate even the very small accomplishments. I consider these positive changes in our life. the new blood flow that Kathleen has in her brain is actually very fragile and puts her at a high risk for either a clot (so she takes aspirin), a bleed or even a slowing of the blood flow from things like BP changes or vascular constriction from hyperventilating or dehydration. We were a wreck for a very long time, watching her like a hawk but we've learned to live with it.
    Mary Grace

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    ((((((Mary Grace & Kathleen)))))) ~

    I'm so glad that the denial was reversed. Many prayers on the way that all goes well with the MRI in the morning.

    Please let us know, when you can, how Kathleen and you are doing.

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

    How did everything go with the sedated MRI? I've been thinking of you and Kathleen and sending prayers that all is well.

    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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