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Thread: Jon Is Seizing

  1. #21
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    How is Jon now, Rose? Oh, what a time you've all had recently!
    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


  2. #22
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    Rose I'm so sorry to hear that Jon is still having seizures. You all must be so exhausted. I pray that the nurse comes tomorrow and can shed some light on this.
    (((HUGS)))
    Mary Grace

  3. #23
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS TO ALL)))))) ~

    After I posted last night, Jon was a mess ~ fidgeting, grabbing his ears, his G tube, scratching at his trache and colostomy, twitching in both arms, unable to keep his head still, struggling to keep his SATS above 88. All seizure activity, I surmised, although it is unlike any other seizure activity he has ever had, and has lasted much longer than any other seizures he has had. At 10 p.m. I gave him 1/2 an Ativan (.5 mg), and within 15 minutes, he settled down and fell asleep.

    I sat on the settee in his room, watching him, until Jim got up at midnight. Jon's SATS started to drop, and we agreed to suction him. That disturbed Jon, and 15 minutes later, he seized with the clawed hand and pursed lips. He was asleep shortly thereafter. Jim sent me to bed about 1:30, but I could not sleep. I was so tired, and I craved sleep, but I couldn't turn off my mind. I just continually prayed for Jon and for Divine Guidance.

    When I got up this morning, Jim informed me that Jon had slept soundly with no seizure activity, and that he was holding good SATS and heart rate. Jon slept for 12 hours. He woke up a bit groggy, but as the day wore on, he was more alert and verbal. Coughing on his own, no need for suctioning. SATS holding at 93-94, and heart rate in the low 80s. Thus far, no apparent seizure activity.

    Jon's nurse will be here tomorrow morning at 8:00 for Jon's blood draw. And we'll find out his levels and go from there. We are continuing his increased dosages on his meds, and will likely do so for awhile, unless his test results lead us in the other direction.

    Today, Jim picked up some fabulous veggie meals from our favorite local restaurant, because neither one of us feels like wearing the Chef Hat, and we're low on groceries. So for the next few days, we'll be using the microwave a lot.

    Now, I'm off to give Jon the spa treatment, so he will be clean and sweet smelling for his nurse in the morning.

    Thank you all so much for your love, prayers, support, and friendship~

    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. #24
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    Keeping those prayers coming. I'm glad you were able to order a good meal and take off one of your many hats for a short time. I hope you get the blood results quick and it will help to get the seizures under control. YOu all must be so exhausted I pray for some rest for all of you...
    Mary Grace

  5. #25
    Distinguished Community Member andromeda31's Avatar
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    Hi-

    Thinking of you and praying things get better and that all of you can get some good rest! ((((hugs))))

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  6. #26
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    Sounds like Jon (and you) is having a rough time of it. So sorry to hear the seizures are continuing. Exhausting for all of you. Prayers that the seizures stop, that you and Jim get some much needed rest and Jon perks up.
    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."

  7. #27
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Thank You All So Much!

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

    Thank you for you prayers and positive energy, and for your continuing support during Jon's health crisis. It means so much to us to know that you are rowing in the boat with us.

    Jon has improved greatly, I am so pleased to report. This is his second day without any apparent seizure activity. He's alert and chatty, much more like himself. SATS are 95 and heart rate is 79! Finally!!!

    His nurse just called with the blood levels ~ Dilantin is up to 9, Depakote is up to 30. So we need to increase his Dilantin a tad, and keep his Depakote at the current dose, as 30 is very close to Jon's therapeutic range. I have a feeling that Depakote is the drug meant to control the simple/complex partials, whereas the Dilantin is to keep the nasty tonic clonics at bay.

    Jon is due for a catheter change on 9/11, so we will likely have another blood draw then. Unless, of course, something changes, and we need it sooner.

    I'm thinking of starting a September Updates thread, so you can all update, instead of your updates getting lost in Jon's seizure thread. Sound like a plan?

    Prayers and HUGS to 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.

  8. #28
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    I am praying for Jon Rose. Glad he is doing better! I met to reply earlier but didn't have time to sign in.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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