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Thread: CN Central: FEBRUARY UPDATES

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    Smile CN Central: FEBRUARY UPDATES

    IT'S FEBRUARY!

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

    It's February 3rd, and we just took down our Christmas tree today. After 2 days of effort, there are still a few remnants of Christmas, but the majority of it has been put away. Jim and I lugged that tree, in the bag provided for it, and into which it fit amazingly, out to the garage, and hoisted it up to sit on top of stacks of boxes and flooring (we've been intending to install for 10 years). I don't know how we did it, and I'm sure we'll both hurt tomorrow.

    As we were crushing the branches, which we worked so hard to unfurl Christmas Eve, and I was stooping down pushing the branches together, I said to Jim, "Remind me why we are doing this. And remind me about doing this when Christmas arrives this year."

    Of course, we have the tree in honor of Michael, and we decorate for Jon and Michael. But I'm sure in my being that Michael would prefer that Jim and I take care of ourselves and not strain at Christmas, or any other time.

    JON'S AIR MATTRESS SAGA

    At least Jon was able to see the tree this year, in passing, as we took him from his bed to his recliner in the living room twice last month.

    Jon's alternating pressure air mattress failed; a plastic tube, which delivers the air to the cells broke (called the manifold). His pump burned out. So, our supplier brought a loaner mattress and pump for Jon, while his are repaired. We bought the mattress/pump in 2012, and it's been used constantly, so it's held up pretty long. It was quite expensive, so it's worth repairing, rather than purchasing a new one.

    We are still waiting on the return of his mattress. But a virus has been circulating around the supplier's employees, so we can wait until that's all over and done.

    When we greet the service tech at the front door, for the return of Jon's mattress, he will be handed a gown, mask and gloves.

    JIM'S CATARACT & LIFTING JON

    Did I mention that Jim has a cataract in his left eye, which caused him to fail his driver's license renewal vision test? We have to schedule an appt. with an eye doc, who will likely recommend surgery. Surgery means that Jim can't lift, stoop, bend, or do anything strenuous for a week or more.

    That means that all of Jon's lifting and turns will be my job, solo. I can pull Jon up in the bed by his bottom sheet, but I cannot turn him. Thus, we have begun looking into options/assistive devices to help me lift Jon, while Jim recovers from eye surgery. There is a sling for his lift, but we're not sure if it will work with his lift. An overhead lift is recommended for this sling.

    So, I've asked for a referral to a PT with our nursing agency, and Jon's doc complied. We're hoping a PT with an expertise in positioning and lifting/turning will be assigned to Jon. And that PT will also be masked, gowned and gloved.

    G TUBE SAGA

    We replaced the port on Jon's G tube, and it has a larger opening, which accommodates the new spike sets. We think we can make it work, but we aren't sure, and these days, we're too stressed and busy to experiment.

    I have the phone number for our local Covidien representative, who, according to our G Tube pharmacy rep, has received numerous complaints about the new spike sets. Just wait until he hears from me! He will wish I'd never been given his phone number!

    INSOMNIA AND SCHEDULING

    For over a month, Jon has had insomnia, and he doesn't fall asleep until anywhere between 3 and 5 a.m. One morning, he fell asleep at 7:45 a.m. and slept til 1:30 p.m. It's impossible to schedule any of his appointments/visits with this erratic sleep pattern. Last night, he fell asleep at 8 p.m. and woke up at 2 a.m. He's been drowsy all day.

    His nurse will visit Friday for a catheter change, possibly a blood draw if Jon is awake by 9:30 a.m. But we may just forego the blood draw, because the stress of hoping he's awake at 9:30 isn't worth it.

    We have to schedule the Toenail Gals for next Tuesday. We'll be scheduling a visit from the service tech with the mattress and the PT to help us with lifting options.

    Wish us luck!

    Please check in with your updates!

    Wishing everyone a love-filled, happy February!



    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, I’m so so so sorry about the shrieking! Great idea filming it as proof. If he is quiet at the docs, is it possible something in his everyday environment is causing the episodes by accident??? I know you would never mean for this to happen but it does happen even if the best care is given.

    Rose, Mary Grace, I have passed all of your lovely advice to my friend so she could forward it to this lovely lady “L”. I’m not sure what she has done so far in terms of treating the spells but seems to take them very seriously. Her family doc might have already told her it was neurologic hence the neurologist appointment but I have no idea. Low blood sugar is the first thing I thought of too since the teacher who had the stroke is a diabetic and told me if his blood sugar got low enough he could pass out from it. I’ll update you if I can.

    Rose,I hope Jon is able to get better sleep soon. Getting a PT to help with lifting options is a good idea!

    SWEET LITTLE UPDATE ON MY END: I bumped into my teacher who had the stroke today!!!! I was walking along when I suddenly heard a sweet accented voice I would recognize anywhere call out to me. My teacher waved me over with a big smile on his face. I ran over to him and we chit chatted. He told me his name actually means "lucky" in his home country which I think is very fitting considering he was not supposed to survive his stroke. He looked SO MUCH BETTER!!! He really looks like his old self now. His eye and head movements seem more under his control again. He focused his eyes on me like he used to before the stroke. His head twitched back a little but he was able to re position it more easily than when I had last seen him. The swelling on his face has gone away. Luckily the swelling never amounted to anything. He told me he still has to take breaks but he’s doing very well. I’m so relieved he’s still okay! It was so wonderful to see him again!
    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)))))) ~

    I hope that Lady L will receive the care she needs to determine the cause of her fainting episodes. How wonderful that you ran into your Lucky teacher, and that he is recovering well. That's great news, and may he continue to heal completely.

    Update on Jon ~

    He went 32 hours without sleep, and finally conked out at 10 this morning. He slept until 6 p.m. We were poised to give him an Ativan, which we prefer not to do. But he gave in and fell asleep. He isn't perky, and I am hoping that he will fall asleep before midnight, and have a good night's sleep, before his nurse's visit tomorrow. We are skipping the blood draw for his seizure med levels, because we can't guarantee that he'll be awake at 9:30 a.m. We're planning on a 2 p.m. visit, thinking he should be awake then. But, every day is a mystery, so who knows?

    Mattress/pump company called today and left a message that Jon's mattress/pump are in. Now we have to schedule delivery. Since we have to get Jon out of bed, it might not happen until the middle of next week. The Toenail Gals are due on Tuesday, and Jon has to be in bed for their care.

    We are hoping that Jon will be awake and with it for Super Bowl Sunday. We are Peyton Manning fans, and this might be his swan song. So, we're planning a party in Jon's room, if he's up to it. And, although Jon can't enjoy it, I'm planning to make veggie crock pot chili, guacamole, and a Mexican salad. We like to try to be "normal" sometimes.

    My theory about Jon's insomnia is hypothyroid. He is losing hair, and his skin is very dry. All of those are hypothyroid symptoms. It's maddening, because we can't give him the med for hypothyroid, and we can't control it through diet. And his formula has the three worst foods for hypothyroid: sugar, soy, and corn.

    ((((((HUGS TO ALL)))))) and be sure to check in here with your updates soon!

    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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    Tyler woke me up at 2:00 this morning gagging, retching, seizing and a temp of 101.3. Gave him Zofran, Valium and Motrin. Have no idea what brought this on. Had a pretty peaceful day other than shrieking around noon and just started up again this evening. More Motrin. The CT scan is normal. The kidney stones haven't migrated and don't seem to be causing the problem. Taking him in tomorrow for chest Xray to rule out pneumonia (which I know he does not have). Don't know if the doctor is going to order a sonogram to check for gall stones or not. We have checked him over repeatedly looking for sores, swelling, redness, bruising, warm areas, anything that could be the potential cause, but nada, zip, zero. This is exhausting and driving us crazy. We want to fix it, but have to know the cause, not just give him more and stronger drugs to mask it. I am still wondering if the gelastic seizures are hitting the pain center. We've watched them for years hit the pleasure center and make him giggle, but the laughter we hear now is pure distress. Jerry has him tonight so I can get some sleep and we are praying for an uneventful night. He needs some peaceful rest.

    I feel for you Rose, trying to work around Jon's erratic sleep schedule. I cannot sleep during the day and have any hope of sleeping at night. Jerry can fall asleep anywhere, anytime any place and in any position. Comes from years of being a Fireman and catching sleep when he could.

    Funnylegs, nice to hear your former teacher is doing so well. Strokes are very hard to overcome. We have them in our family and they can be very devastating.
    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, Tyler, & Jerry)))))) ~

    So kidney stones are ruled out. And you've ruled out other potential sources of pain, except gallstones. Running a temp ... hmmm ... could he have picked up a bug in one of the medical environments (urgent care, doc's office, CT scan place, etc.)? Or ... gelastic seizures emanate from the hypothalamus, which also controls body temperature. Maybe you could show his neuro the videos you've captured and get his take on the gelastic seizure theory? Can you email his neuro, and send the videos, so that you don't have to cart Tyler into his office?

    Although Jim was not a fire fighter, he is just like Jerry in the sleep department. Anywhere, anytime, sitting, reclined, doesn't matter. The ICU night nurses used to tell me about taking care of "The Boys," meaning that they would be careful not to wake Jim when they tended to Jon, as Jim would fall asleep in the recliner next to Jon's bed.

    You and Jerry should try to work out some kind of a sleeping schedule, where you cover for each other so you can have a decent amount of concentrated sleep. This is what we try to do with our split shift, but lately our shifts have overlapped a lot. Jim dozes during the day quite often. He got to bed at 7 p.m. tonight, and he'll likely get up about 1:00 a.m. That puts me in bed by 2 a.m. I wake up at dawn, regardless. It's my body's clock. Can't change it. So, like you and Jerry, we are perpetually sleep deprived, and that is not healthy, particularly for all 4 of us, who aren't spring chickens anymore. Right? Whatever you can do to garner more sleep, I strongly advise doing it. Take care of yourselves, so that you can keep taking care of Tyler.

    I pray that you can figure out what is causing these episodes for Tyler. I'm thinking now, along with you, that it's neurological. And gelastic sounds like the appropriate designation. I'm so sorry! Any chance that you might try CBD oil again? I know that's got to be difficult, to know which strain, what dose, and how long before you see any changes. I wish that I had an answer for you!

    Healing prayers on their way, as always, and prayers for sleep and rest 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.

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    I know Tyler does not have pneumonia, so having a chest Xray seems like a huge waste of time, much less exposing Tyler to yet more radiation. He had a good night, but started in shrieking just a few minutes ago. More Valium, more Motrin. Should own stock in both.

    I am so used to waking up and listening for Tyler, that it has become second nature. Slept in another bedroom last night and still woke up at 4:00 listening. I gave up full nights of sleep many, many moons ago. I function better on less sleep than my husband does.

    Can't send a video to the neuro, so would have to take it in. Considering, he hasn't been able to stop Tyler's daily seizures in 21 years, I don't see that he would be able to stop this kind. Showed him the newest myoclonic seizure that Tyler now presents with a few weeks ago. He was mildly interested and acknowledged that there was nothing he could do to stop them. All avenues have been tried. We know Tyler has gelastic seizures along with about a dozen other types. Every now and then a new type pops up, which makes me very suspicious about this behavior. Since there is no data on the progression of Ohtahara past childhood, maybe this is part of that progression. Grim thought, but then, I am a realist. Hate to do it, but if we have to, we will accept the prescription for a narcotic pain reliever. That is going to be a last resort though.

    Sent a video to my brother to watch and he was unable to watch it all the way through. It upset him too much. No one wants to see Tyler suffer like this.
    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, Tyler, & Jerry)))))) ~

    Wow, do I hear you. I feel your frustration. Doctors who scratch their heads or throw up their hands. Tyler is suffering, you and Jerry are suffering watching him and feeling helpless. And you're so right ~ what's the point, if the docs are going to give up or say "I don't know what to do"?

    And you know that gelastic seizures are the most difficult to treat. It seems that so little is understood about gelastic seizures, and they are considered "rare." Well, Tyler has them, and Jon and Michael had/have them. And I know other parents posted here in the past about their children's gelastic seizures, as well as on our Epilepsy forum. I wonder whether any research is even being done on gelastic seizures, because they are regarded as rare.

    A neuro once described the Kindling Effect to me with this metaphor: A record on a record player, the needle slips, and it gets stuck in a groove, and it keeps getting deeper and deeper into that groove, until it skips to the next groove and starts wearing it down. For Michael, one seizure beget another and another and so on. And, I figure that you suspect the same is true for Tyler.

    It can't be comfortable for Tyler to go to the doctors and have tests, when he is likely hurting from the stress and strain of these episodes. He is probably aching all over. I can only imagine.

    If you decide to give Tyler a narcotic pain reliever, which one are you contemplating?

    I hope you don't have to go this route, but I understand completely the need to be a realist. Tyler desperately needs relief.

    I know what you mean about sleeping and waking up. I do that too, always have. For years after Michael passed, I woke up at 2:30 a.m., because he always seized at that time. Now, I wake up if I hear Jim talking to Jon, because that means Jon's awake. We're tuned in, Tamie. Can't help it. I know. But we still need more sleep than we get, especially you.

    Healing and strengthening prayers continue ~ and I wish that I could do more for all of you ~

    Sending many ((((((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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    Tamie, I hope Tyler is doing better! Thank you! I’m relieved my teacher is doing this well. He was only a half hour away from dying when his docs discovered the stroke. I’m so sorry others in your family had strokes!!!! If you don’t mind me asking, did they recover? How long did recovery take? I know it takes years for most to recover.

    UPDATE ON ME: I’m not sure if you guys remember but back in September I had a weird snafu with somebody. Here is the old post in quotes:

    “Thanks Rose. Unfortunately you are absolutely right about people being inept. After I made that post that person's higher ups totally messed me up 3 more times! Unbelievable! These F*ck ups(excuse the language) have now led to my friend who saw that outburst earlier getting really angry because I cancelled 2 plans with them in a row with SUPER SHORT NOTICE. Now I'm terrified because in their anger my friend said some words that almost sounded like they meant "If you keep doing this we can't be work together or be friends anymore". I know this was said in anger and honestly I kind of deserve the anger. I could have prevented the outburst by not letting that jerk near my friend and could have waited before scheduling any events with them until I knew there would not be any problems. I know that the outburst my friend witnessed a few weeks ago has to be part of why they finally lost patience with me. But PLEASE PLEASE PLEASE PLEASE pray that my friend does not hate me forever! If that happens EVERYTHING my friend and I have ever worked for will be COMPLETELY DESTROYED!!! I can't lose them. Pray that my mentor knows these snafus will NEVER happen again and how TRULY UTTERLY SUPER SORRY I am! Pray that my friend knows I can't control the actions of others who are completely irresponsible. “
    Yes I know I over reacted a lot LOL. Well by sheer chance I ended up seeing them in person today after so many months. Until this point we have been communicating digitally because life just got in the way i.e my films(my outreach projects), my teacher friends’ stroke and my work and his work schedule etc. Luckily we have forgiven and forgotten and seeing him today confirmed this to me because we communicated the way we used to. Fww! More updates soon...
    Last edited by funnylegs4; 02-11-2016 at 05:22 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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    My uncle had a massive stroke at 50. Never fully recovered and was severely disabled. His daughter ( My cousin) and her mom both had strokes that took them from us. My brother is having TIA's (mini strokes) and is doing well so far. Heart disease and strokes have a major impact on my family.
    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'm so sorry your cousin and her mom died! That's awful! So sad! Thanks for telling me though!

    UPDATE FROM ME: My friends's co worker "L" had a stroke and it had something to do with her fainting spells. Perhaps the fainting spells were a side effect or symptom of her stroke? She almost died! She might still be at risk of dying at this point. Somebody mentioned to my friend that "L" might be having hospice care. Does that mean she is dying? My friend wasn't sure. I don't want "L" to die! Please.please pray she doesn't die and recovers like my teacher did!!! Why the hell is everybody around me having strokes??? Jeez! (btw this makes me wonder if my teacher ever fainted after his stroke?)
    Last edited by funnylegs4; 02-12-2016 at 09:21 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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