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Thread: CN Central: MARCH UPDATES!

  1. #11
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4)))))) ~

    Oh, no ~ you certainly didn't upset me. I've just been very busy with Jon, Jim, home, etc. and haven't had an opportunity to reply.

    I read your blog post and intended to reply, then got interrupted. I'm so happy for you that all is going well.

    Prayers for "L" to recover quickly from her medication mix up. That's great that your teacher invited you to visit. I hope that he is doing well and enjoying his new projects.

    Jon is going through a flare of his lymphedema, so we're heavily into his therapy and managing his symptoms, including fever and low SATS.

    His new nurse is young, pretty, and very nice. She'd been here about 18 months ago, with his previous nurse, training for the agency. She had worked in a hospital ER, so home health is a new venture. She's very efficient, and she did quite well placing Jon's catheter. We're looking forward to getting to know her and welcome her to our family.

    A wound care nurse, who cared for Jon in 2009 for 9 months, visited last week to check Jon's coccyx. Thankfully, she said the wound was under control and that we should continue what we've been doing. We were quite relieved. It was great to see her and catch up on her news.

    Take extra good care of yourself and keep us posted.

    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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  3. #12
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    Oh, no ~ you certainly didn't upset me. I've just been very busy with Jon, Jim, home, etc. and haven't had an opportunity to reply.

    I read your blog post and intended to reply, then got interrupted. I'm so happy for you that all is going well.

    Prayers for "L" to recover quickly from her medication mix up. That's great that your teacher invited you to visit. I hope that he is doing well and enjoying his new projects.

    Jon is going through a flare of his lymphedema, so we're heavily into his therapy and managing his symptoms, including fever and low SATS.

    His new nurse is young, pretty, and very nice. She'd been here about 18 months ago, with his previous nurse, training for the agency. She had worked in a hospital ER, so home health is a new venture. She's very efficient, and she did quite well placing Jon's catheter. We're looking forward to getting to know her and welcome her to our family.

    A wound care nurse, who cared for Jon in 2009 for 9 months, visited last week to check Jon's coccyx. Thankfully, she said the wound was under control and that we should continue what we've been doing. We were quite relieved. It was great to see her and catch up on her news.

    Take extra good care of yourself and keep us posted.

    Love & Light,

    Rose
    Thanks so much! I met a blind person today who said they used to be bullied and that my films helped them too! Glad I didn't upset you! I'm sorry about the lymphedema! Hope he feels better soon. I promise to keep you updated.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. #13
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up

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

    How wonderful to receive all of this positive feedback affirming that you are reaching others and achieving your purpose. I'm so very proud of you!

    I did post a comment to your blog entry. And thank you for responding to my one and only ever blog post!

    Thank you for your good thoughts for Jon. The lymphedema isn't responding as well this time to therapy as it did the last time his fluid build up was this severe. But he's holding very good vitals, and he is peeing and pooping like a Triple Crown Winner!

    We remain in a holding pattern for Jim's eye surgery, as flu/cold season still seems to be rather active here. It seems to take longer to reach the West Coast for some reason. Looks like we'll be doing this in April, which is fine. I'd rather wait than for Jim to pick up a bug.

    We also need to schedule Jon's GI doc to visit to change Jon's G Tube. I'm praying that the tube holds out for another week or so.

    Hoping to read updates here soon from our inabsentia members ~ Tamie, Donna, Lisa, CP Chick, Marcie ... and everyone else I've missed!

    Lots of Smoothies waiting for all of 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.

  5. #14
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    Finally found out what has been causing Tyler's pain. Took him to Physical Medicine yesterday, told the doctor what has been happening for the past two months and showed him the video. He immediately knew what was going on. Tyler has AD or autonomic dysreflexia, which would not show up on any of the tests. Potentially life threatening and can result in stroke, retinal hemorrhage, cardiac arrest, pulmonary edema and death. Wonderful. His autonomic nervous system is fighting itself and sending signals that cannot be interpreted by the brain. It is in hyperdrive and out of control. It is considered a medical emergency, yet not one doctor we have seen in the past two months has even considered or mentioned it, even though Tyler fits the symptoms like a glove. We have to get his current UTI (yes, he has another one) cleared up, then the doctor wants him to have a super pubic cath put in (permanent). This should help eliminate at least three of the triggers. A distended bladder, urine retention, chronic UTI's are just a few of the triggers. Even a breeze blowing on him can be a trigger. We have to stop this now or risk losing Tyler to a stroke or cardiac arrest. Good new/bad news. I leave tomorrow for South Carolina to see Tyler's mom, stepdad and siblings. Lousy timing, but all the arrangements have been in place since January. At least my husband had nursing almost every day I am gone, so he gets a much needed break. What next?

    Glad to see the updates on everyone. Take care.
    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."

  6. #15
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    ((((((Tamie, Tyler, & Jerry)))))) ~

    A diagnosis at last! It's astonishing that none of the doctors, who have seen Tyler over the past two months, thought of AD as the diagnosis, given Tyler's urological history. This isn't even thinking outside of the box, in my opinion. This should have been obvious to all of them, or at least to the urologists and ER docs.

    From my very brief Google search just now on AD, it would seem that the supra pubic catheter is the best alternative for Tyler. At this point, an indwelling cath is probably not going to be beneficial to him. I don't know much about the supra pubic cath, but I'm sure that there is plenty of info on the internet about it, so that you will be informed before the procedure. Tyler may need a home health nurse for awhile.

    Perhaps it will help you to be away for a little while to recover from the tremendous stress of the last 2 plus months. Hopefully, you will be able to get some solid sleep, and to rest and relax. I'm glad that Jerry has nursing assistance in your absence, and I hope that he will take advantage of that help and also rest and sleep.

    Prayers for safe travels for you, and for the antibiotic to work effectively to eliminate Tyler's UTI, and that the supra pubic cath will resolve the AD triggers, and that Tyler's misery will be abated finally. A full recovery, return to continuous health and no UTIs, and peace, sleep, and calm for all of you.

    Blessings on you all ~

    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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    Tamie, thank god! You finally have an answer! Makes perfect sense given the symptoms. It definitely seemed neurologic to me. Just goes to show you what a doc with a good head on their shoulders can do. I'm sorry the condition is so dangerous and that it was not caught sooner but I'm thrilled you can do something about it now! I'm relieved you caught it before Tyler had a stroke or worse…Have a good trip!

    Rose, thank you ever so much! Thank you for commenting! I replied back on my post. I'm so honored to have your support! You should totally write more blog posts! The pooping and peeing is good news!
    Last edited by funnylegs4; 03-22-2016 at 07:48 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  8. #17
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    Wow Tamie finally a diagnosis! So glad that someone figured it out. Sorry it's such a serious condition hopefully you'll be able to get it under control now. I wish you safe travels and I hope you can recharge yourself after such a stressful time.
    Rose so glad the vitals [poop and peeing are going well! Hopefully the lymphedema will get under control.
    Nothing much new around here... The blood in Kathleen's urine had stopped and then started up again. We have an appointment April 12 with the urologist and an ultrasound. Hopefully it's nothing serious... I've been planning Easter dinner. Usually my sister does this but her and her husband went to Hawaii. Unfortunatly they are on their way home My brotherinlaws brother passed away yesterday morning. They weren't scheduled to come back till next Tuesday.
    Mary Grace
    Mary Grace

  9. #18
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    ((((((Mary Grace)))))) ~

    I'm so sorry that your brother-in-law's brother passed away. Sending prayers of peace and comfort to your family.

    Praying with you that the bleeding is nothing concerning.

    What are you serving for Easter dinner?

    Sending extra hugs ~

    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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    Well call me crazy but I'm cooking a Ham and Turkey because I couldn't decide. I always go a bit overboard. But the up side is no cooking for the week following Easter. I'm also making green bean casserole, scalloped potatoes, fresh broccoli,cauliflower, and carrots. Kind of a buffet. Pineapple pudding cake for dessert
    Very sad death. He had brain cancer but it wasn't the cancer that killed him... He had surgery and then on Monday got his stitches out and did quite well. Later that day he got very sick and couldn't even get up. Was taken by ambulance to the hospital and needed to be put on life support and helicoptered to a different hospital. He had sepsis and his organs started to shut down, they took him off life support later in the day and he passed away shortly after. So scary that it took his life so quickly...
    Mary Grace

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    I'm so sorry for his passing Mary Grace! So sad! I know a lot of times people who have cancer die of complications rather than the cancer itself. I hope he is in a place where there is no pain.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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