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Thread: Jon Is Seizing

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

    Lisa ~

    Thankfully, it wasn't too hot for Jim to move the generator, as it was morning. But the generator is full of gas, hence, heavy, and I worried about Jim being able to move it on his own. In that situation, which is an emergency for Jon to be on a deflated mattress, he can't think about that. He just has to get it set up and running. He said he didn't hurt himself, and he told me today, "I have to start doing things!" He's frustrated that he's been sidelined by his RA for all of these months.

    Oh, how great it would be if we could just do a finger prick for blood levels at home! Why don't you invent that test in your spare time, Lisa?!

    Wow, Caitlin is at the top of the Depakote range, which is 50-100. One might think that a 6'1" 160 lb man would need a higher dose than a petite 14 year old girl. Yet, it is the exact opposite. And I hear you, about wanting to take Caitlin off of it. I would truly love to take Jon off of all of his meds, because they present so many interactions with other drugs, and they have so many adverse side effects. He's been on Pheno, since he was 2 years old, Dilantin since he was 13, and Depakote since he was 26. That's a long time to try to wean off of them in any reasonable way. And we already know that when his med levels are askew, he seizes.

    Thank you for your thoughts and prayers ~ and back at you ~

    Tamie ~

    I'm so sorry to hear that Tyler is seizing, and all that he endures as a result. How well I remember those seizures with Michael, and it is just heart wrenching to be so helpless in stopping them. I dreaded the full moon. And in Michael's last few years, the new moon affected him the same way. How do we fight that? We can't!

    Have you tried a new strain of MMJ for Tyler, or have you abandoned that option? How I pray that something will help him.

    Do you and your husband sleep in shifts, like Jim and I do? That has been somewhat successful for us in terms of getting more sleep. Jim takes the night shift, so I can handle all of the "business" in the day time (scheduling visits, ordering supplies, etc.). We don't have it down to a perfect science, and much of our time is spent working together for Jon. But at least I can go to bed at 1 or 2 a.m. and know that I can sleep without having to get up to tend to Jon. Unfortunately, I always wake up at dawn. That's my body clock, and I can't help it. I hope that the sleep study will bring some answers to help your husband sleep better.

    Yes, what better time to upgrade electrical equipment than in the hottest month of the year? Let's shut off all of the electricity for 8 hours, when it's 98 degrees! Brilliant! But, they figure that most people are at work, so they won't be affected. True, the only people at home during a weekday are elderly folks, disabled folks, and mothers with infants. In other words, the most vulnerable people! I hope you didn't have to spend the entire day without power. I highly recommend getting a generator, because this is going to keep happening to us.

    I wondered whether you'd be affected by the Big Bear fire. It's just a tinder box all over California now, and those trees are like bottle rockets. It's very sad. I'm glad that your cabin and your sister's house are safe. But I imagine that the air quality up there is extremely unhealthy, so I'm happy you left.

    Thank you for your prayers ~ many being returned to you ~

    Jon has had a seizure free day. SATS are good, and he's off of O2. We tweaked his meds slightly, and so far, he has responded well.

    I feel like Queen for A Day (1950s TV show) today! Jim prepared potatoes for roasting tonight (garlic roasted ~ they are super delicious), and his specialty Diane sauce (butter, olive oil, Dijon mustard, green onions, parsley, and veggie broth ~ it's missing the brandy, because we don't have any), which is my favorite.

    I've said many times to Jim that I wish I had a sous chef (to chop, slice, dice, etc.) or for that matter, A CHEF! When I finished cleaning the upstairs this afternoon, I went down to the kitchen to find Jim in the process of cooking. "Chef Jim at your service!" Jim loves to cook, actually, and he enjoys watching cooking shows. He makes beautiful mushroom/feta cheese omelets. His English roasted potatoes are divine. His Yorkshire Pudding is incredible.

    Once he finished in the kitchen, I said, "Thank you, Jim, for applying for the position of chef. Your credentials are impeccable, and your availability is ideal. You're hired!"

    In case you're wondering whether his sauce and potatoes are the entire meal ~ I'm making Mediterranean asparagus, and he'll have a Quorn burger, and I'll have a Boca chick'n patty. For us ~ that is a feast!

    Let's all gather here



    and sip some smoothies for a little while



    We all certainly deserve it!

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

    I spoke too soon. Last night, Jon had a seizure at 10:00. Then another at 11, 11:30, 12:30, 1:30, 2:30, 3:00, and 3:20.

    I woke Jim up at 2 a.m., and we tended to Jon and discussed Ativan. We agreed that he would get Ativan, if he had another seizure. We were hoping his night time meds would kick in, but they didnít. Jim sent me to bed at 2:50, because I was just exhausted. At 3, I heard Jimís voice, comforting Jon, and I knew it was another seizure. So I went downstairs, and we gave Jon Ativan. Jim sent me back to bed, where I just laid there listening and praying. Jim came up at 3:20 to tell me Jon had had another seizure. Then at 4 a.m., Jim came up and said, ďHeís asleep.Ē

    Thatís when I was finally able to let go of some stress and fall asleep. Unfortunately, I woke up at 6:30 to the sunlight and the trash truck noise. I couldnít go back to sleep, too worried about Jon, so after Jim told me that Jon was still sleeping and had been fine, I went back to bed. Again, laying there non stop praying, not sleeping.

    Jon slept for 10 hours, and he awoke groggy, but has gained more alertness as the day has worn on. Iím sure that he was in an Ativan fog, and possibly still post-ictal. SATS and heart rate were good while he slept, and when he woke up, he had several big coughs, plus one suctioning. Temp is normal. Heís chatting with us, smiling, and is Ö well Ö heís amazing!

    We didnít turn on the a/c until after he woke up, and apparently it was 101 here today. Iím so glad that we have Dyson fans, because they work well to cool down the house.

    Weíve increased his Depakote and Dilantin by another small increment, and weíre praying that weíre heading toward normal blood levels soon, so that he will stabilize and stop seizing. We canít go too fast too soon, or he could become toxic. Itís a delicate balance. Weíve been here before, in the hospital, where we managed his doses every day, by agreement with Jonís intensivist. But itís been 3 years since weíve had to do that, so we have to reach back into our memory banks. And believe me that is a LONG reach for us these days!

    In the hospital, we had the advantage of daily blood draws for levels, so we could know whether we were on track. Not possible at home, of course. So everything is determined by his clinical presentation. Seizing? Up the meds. Lethargic? Lower dose a tad.

    Weíre flying by the seat of our pants, and so far today, Jon seems to be better. But I donít want to speak too soon again.

    Thank you all so much for your love, prayers, and support. Please know that we return all of it to 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.

  3. #13
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    Rose, You deserve more than some smoothies you deserve champagne!! That sounds like an amazing meal! Lucky you a live in chef. My husband BBQ's but that's about it. I hope you all get some well needed rest and pray for a seizure free day!
    Mary Grace

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    Continued prayers going for all of you.

    Marcie

  5. #15
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    ((((((Hugs to All))))))

    Marcie ~ Thank you so much for your prayers. They are working!

    Mary Grace ~ Although Jim is an excellent cook, he doesn't cook that often any more. It's a rare event, which is what made that meal so special. Jon started seizing that night, so I didn't make the asparagus. Today, I gathered up all of the salvagable veggies in the fridge, chopped them, and I'll sautee them in olive oil, throw in some Field Roast Italian sausage, and serve it over pasta.

    And, I am able to do that, because Jon has stabilized, thankfully. He has improved on the increased Depakote and Dilantin doses. Now we have to keep watch that he's not getting too much. He's had some sleepy/droopy moments today, but he's also been awake and alert and participating. We watched the Travers Stakes with American Pharoah today, and Jon was quite animated. Unfortunately, American Pharoah lost. But we still had fun, pretending we were at the race track, mingling with the high falutin' hoity toity horsey folks.

    It has been 3 weeks since all of this began. We've had 3 nursing visits, 1 trip to the ER, 2 antibiotics, O2, suctioning, seizures, a heat wave, a power outage, and we're still here, still at home, and making progress.

    PRAYER WORKS!

    We deserve no praise, because we are just following what we've learned through the years, and receiving Divine Guidance in our decisions. Jim and I are taking our vitamins, and we do eat, but certainly not as well as we should. So I have prayed for strength for us to get through this with Jon, and I know you all have prayed for us too. And we are so grateful for your prayers. You have no idea how much your prayers mean to us.

    So many of our friends say that they wish that they could do something to help us. The very best gift we can receive, the greatest help in our time of need, is love, friendship, support, compassion, and prayer. And we are so blessed to have received all of this in abundance from all of our friends and loved ones.

    THANK YOU!

    When I was in elementary school, I found a necklace charm in the fields on my way home one afternoon. It was a round glass ball, with a seed inside of it, and the outside was encircled in gold. I showed it to my mother, who explained that the seed was a mustard seed. She directed me to Matthew 17:20: If you have the faith of a mustard seed, you can move mountains.

    For many years, I wore that mustard seed on a gold chain to remind me of the importance of faith. I learned that having faith doesn't always mean that things turn out the way you want them to turn out. In my prayers, I ask for strength to handle whatever outcome, because I know that I am not in charge of anything really. And even in the most frightening, the darkest moments, I have felt Grace.

    This is why your prayers and loving care for us means so much to us. And why we return all of those healing prayers to you, your children, your families, friends and loved ones. There is so much power when we all pray together. Thank you.

    And now ~ a SHOUT OUT to Nick, Donna's son, who is turning 27 tomorrow!

    HAPPY BIRTHDAY NICK!


    Smoothies All Around to Toast Nick!



    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 08-29-2015 at 07:04 PM.
    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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    Rose, Sounds like another good meal. I love veggies and we cook a lot of them. I have a garden this year so i'v been lucky to have some fresh veggies. I've made tomato sauce a couple times already. I will continue prayers that Jon will be seizure free and that you and Jim will have the strength and goo health to enjoy everyday together. YOu say you don't deserve praise... I know what you mean, I've come to learn that just because a child has great needs not all parents provide these needs with such love and care. Kathleen's teachers have told me what a grea job we do and my response is always "who wouldn't do everything they can". They see everyday parents who don't and that is sad...
    We live about 20 minutes from Saratoga Race track but watched the race on TV. The race was sold out pretty early 50,000 people. I love that you have the necklace and it reminds you of the faith and hope that is needed. Thank you for the updates. I will be watching for another good day for you all!
    Happy Birthday Nick!!!!
    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Just checking in quick before I go to bed. Glad you are all still at home and that things are getting better! Thinking of you and sending prayers! We took Caitlin to church today...she made it most of the hour but was ready to go after about 45 minutes. I am trying to get her used to getting out of the house in preparation for school....1st day back is Tuesday the 1st. Tomorrow we go to Milwaukee to get her stitches out! Yay! Wound has healed nicely, can't wait to see what the surgeon says. I will update more tomorrow night. :)

    Hopefully things keep looking up for all of us here!

    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!!

  8. #18
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    ((((((Mary Grace)))))) ~

    Wow! 20 minutes from Saratoga race track! If you walked outside, could you hear the crowd cheering and roaring? What a beautiful, bucolic place, and the weather looked perfect. Up until the very last moment, it looked like American Pharoah was going to break Whirlaway's 1941 record. We always watch the Triple Crown races, but this is the first time we've watched the Travers Stakes. The horses are so exquisite, so intelligent ~ I grew up around horses, before the land was consumed by tracts of homes. Wandering through avocado groves to the stables to visit my favorite horses was such a treat.

    I'm not sure whether I still have the mustard seed pendant. I have a conglomeration of jewelry inherited from the elder women in my family, all stashed in various jewelry boxes. The pendant would be 55+ years old now. It instilled in me a vital lesson in life, which has been my fortress in the midst of storms. I've often wondered who owned it originally and how it became lost. But I know why I found it.

    ABOUT JON ~

    Unfortunately, Jon is still seizing. I have suspected it today, as he's been gurgling and needing suctioning, and his SATS have been dropping to the 80s. He says "No" to every movie DVD we offer him, and insists he doesn't want to watch whatever he's chosen. That is unlike him. At 8:15, I walked into his room to find him with pursed lips and and clawed hand. He had his usual med doses at 5:45, so that's enough time for them to take effect. We were concerned that we were overdosing him, because he seemed droopy. Now, I'm thinking he's droopy from being post-ictal. Too many meds in his system could contribute to congestion and respiratory issues. But then, so can seizures.

    Back to the drawing board. Jon's nurse will visit on Tues. or Wed. morning (I'm going to ask for Tuesday now that I've seen this seizure) to draw blood levels. We'll take it from there, I guess.

    Paddling upstream with all of our oars ~

    Prayers for all of you and your children and loved ones ~

    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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    Lisa, So glad to hear that Caitlin is doing so well. That's very exciting that she starts school tomorrow. Can't wait to hear how her first day goes.
    Rose, The horses really are beautiful! I was shocked that American Pharoah din't win. Our news is filled with Saratoga Track news all summer. Saratoga is a beautiful town. I think we take it for granted that we're so close. I've only been to the track a few times. Just like being close to NYC we take it for granted and don't take advantage of it often enough. I'm sorry to hear about the ongoing seizures. Praying that you can get the nurse in on Tuesday and get things figured out.
    Mary Grace

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    ((((((Lisa)))))) ~

    So happy to hear that Caitlin's surgical site has healed well, and hoping all goes smoothly with the removal of the stitches. Are you planning half days for Caitlin at school initially? Prayers that Caitlin is able to tolerate being in her chair and at school. Thank you for your prayers for Jon and us.

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

    Thank you for your prayers. Jon had a difficult night, requiring 1/2 an Ativan at 10:00. He was so restless, fidgeting, twitching. SATS kept dropping. Finally went to sleep, but needed a suction at midnight, then seized 15 minutes later. Slept all night, and is still sleeping, with good SATS and heart rate. We're praying that he wakes up seizure free.

    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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