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Thread: CN Central: NOVEMBER UPDATES!

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

    In your shoes, I would have done the same thing with the Dilantin. Tyler's level was dangerous. I'm glad that the seizures haven't increased too much and pray it stays that way. Good news also that Tyler had a relatively good weekend, until the ride home. Sorry you got stuck on the freeway. I haven't heard of the Gopher Canyon fire ~ hope it's under control now. I'll cross all of my crossables and send up prayers that the EEG, ENT visit, and the heart monitor provide some information to help Tyler.

    Your grandson's infected knee wound sounds scary. How is he doing now? Is his temp normal? Is he on antibiotics, or are you waiting to find out the culture results?

    Praying for calm uneventful days for all of you ~

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    So much for no surprises. Tyler's screaming was due to another UTI. First since August 31st. Waiting for the culture to get back, but the Urologist is putting him on Cipro in the mean time. He's miserable. What next? Taking him in this afternoon to recheck the Dilantin level and see where we're at.

    Jaxon is doing much better. Still haven't heard what the culture showed, but his primary care increased the Keflex to a higher dose, so he is still on two antibiotics. The wound is still draining but it's very hard to keep an active 7 year old down. Just very thankful it wasn't worse. We were lucky.
    Last edited by Tamie; 11-17-2016 at 07:10 AM.
    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."

  3. #13
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    ((((((Tamie)))))) ~

    Oh dear, I'm so sorry that Tyler has another UTI. I hope the Cipro is effective. Also hoping that Tyler's Dilantin level is in normal therapeutic range.

    Hoping too that the antibiotics will be effective for Jason's infection.

    Keeping those prayers going for all of you ~

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Just heard from my daughter. It was MRSA. We dodged a huge bullet by acting swiftly. You just don't mess with infections. So dangerous.
    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."

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    ((((((Tamie)))))) ~

    I would have bet the farm (if I had a farm, that is) that the infection was MRSA. So common these days, because it is everywhere. I don't think Keflex is strong enough to combat MRSA. If he's on two antibiotics, perhaps the other one will do the trick. When Jon had MRSA from his ingrown toenail, he was prescribed Bactroban ointment. When he had MRSA systemically, he was on IV Vancomycin.

    Healing prayers ~

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Jaxon is on 500mg of Keflex and on a course of Bactrim as well. The doctor wanted to cover all bases. Nothing slows him down for long. Trying to keep his hands off is a challenge however. Sure don't want Tyler picking it up.

    No levels yet on Tyler. He's been shrieking all day long. Started his Cipro tonight and praying it's the right antibiotic for the infection.
    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."

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    ((((((Tamie)))))) ~

    I recommend: lots of hand washing, wearing gloves when changing Jason's bandage or applying ointment, wearing gloves when you do anything for Tyler, and wiping down everything with Clorox or Lysol wipes frequently.

    Hope the Cipro works quickly.

    Love & Light,

    Rose
    Mom to Jon, 47, (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 Everyone, I am sorry that I have been MIA here on CN! But I'm glad to catch up. Nick is doing well - he had a lesson in blackjack in preparation for his BIG TRIP (staying one night) to the casino near us. In blackjack he keeps tapping his tray (means 'hit me' or 'give me another card'). He's so excited and we've not idea if he will be able to stay the whole night in a non-air mattress but we're ready for anything including bringing him back home if he decides not to stay. That happens on December 1st. Rose dear, Happy Belated Birthday to Jon!!! And I pray he is back to fighting form now with no more scares. Tammie, I hope Tyler is feeling better! Gosh, you have been having a terrible time with his UTIs and now MRSA. :( I send you all my love and a very Happy Thanksgiving!
    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


  9. #19
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    ((((((Donna)))))) ~

    It's so great to hear that Nick is well! I hope that he has a blast playing blackjack and that he's able to manage without his air mattress. Will you be going with him? Fingers crossed he wins big!

    Thanks for your good thoughts about Jon. Although he is still filled with fluid, he is better, with the exception of his weird, random, unpredictable sleeping. He has no rhyme or reason to when he falls asleep, nor the duration of his sleep. Some days it's 12 hours, some days it's 3 or 4 hours. It's impossible for us to plan or to schedule anything. We're grateful for Amy's organic frozen pizzas, since we can't cook without waking him.

    Jim asked today what we should have for our Thanksgiving feast. I replied, "We'll have to see what happens with Jon that day, since we can't plan on making a big meal, if he's sleeping or trying to fall to sleep."

    Jim said, "I'll make Roasted Potatoes (his "famous")!"

    I just shook my head. "That would be wonderful. But stock up on the pizzas, when you go to the store on Monday." He is such an optimist. Gotta love him. And I do.

    Hope you'll drop by again soon. Let us know how Gamblin' Man Nick does at the tables!

    Love & Light,

    Rose
    Mom to Jon, 47, (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. #20
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    Happy Thanksgiving CN!!!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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