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Thread: CN Central: JULY UPDATES!

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    Smile CN Central: JULY UPDATES!

    HAPPY FOURTH OF JULY AND CANADA DAY!

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

    I blinked, and suddenly it's July.

    For us, it's beginning with Jon retaining fluid and all that that entails.

    We have no vacation plans, of course. And the extent of our celebrating on the Fourth will be watching fireworks on TV, and probably some kind of meal with potato salad.

    Mid-July, Jim and I will celebrate our 22nd wedding anniversary. I have told Jim that the gift I most want for our anniversary is new toilets in our bathrooms. If we do nothing else in our home this year, I demand new toilets!

    Jim wants new gutters (to catch all of that rain we're having ), so that will be my gift to him.

    Isn't it romantic?!

    So, as we journey along on this whirlwind year, please stop by and share your updates here.

    Open 24 Hours. We Never Close!

    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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    It's boiling hot here so I haven't done much except see the movie Finding Dory which actually does a really good job representing disability! You should all see that movie! I also heard from my teacher with the stroke. He told me he normally works some kind of job in the summer but has decided to take time off work for the whole summer. His body just needs a break and he said "I'm finally taking your advice and learning to relax". I just pray that he hasn't had any more health issues or had more of the dizzy spells. He sounded okay but was a bit vague as to why he needs this rest. Maybe he's still shy about being vulnerable and needing help?? I know the part of his brain that was damaged sometimes has to do with feeling temperature so I'm hoping the heat isn't making him miserable. I told him not to worry and that he deserves time off. I'm glad he is slowing down because he always does so much. Please pray he is feeling well.

    Happy early anniversary Rose! Hope the fluid goes away. Happy early 4th of July!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Wow how can it already be July?
    Happy anniversary Rose! Sounds like perfect gifts to me LOL. My husband and I have been married 30 years and all our gifts have always been very practical. In fact so are our birthday and Christmas gifts. We'll be spending the fourth getting more home repairs and such done for Kathleen's graduation party. Praying that the fluid retention will go away.
    funnylegs, I can tell you that Kathleen doesn't do well in the heat. It exhausts her. She avoids it completely when she can. It's hard for her to regulate her body temperature and she doesn't seem to sweat so I'm sure that makes it even harder. Hopefully your teacher has just decided the rest will be good for him and help his body to continue to heal.
    We've had a very busy couple weeks. Vacation was amazing as always. Great weather and so much fun with friends who feel like family. The group we go with has grown to 54 people (kids and adults). I did go with my closest friend(she's the woman in the graduation picture with Kathleen, she walked her up to the stage) one evening to Cape May for the first time. Had dinner and shopped.Now we're working on getting the house ready for her party. She will start going in to read to kids at summer school next week. We may go back to the personal trainer she worked with a few years back.Working on getting my pictures and video ready to post. My son is working on a slideshow for her party too.
    Praying for good health and happiness for all my good friends here!
    Mary Gace

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    https://www.facebook.com/rsrc.php/v2...PAXP-deijE.gif

    Not sure if this video will work but give it a try. Kathleen's graduation.
    Mary Grace

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    Unhappy

    ((((((Hugs to All)))))) ~

    It's gone from bad to worse for Jon. He woke up this morning with a torso full of fluid, as well as his legs. SATS dropped to mid 80s, so he's been on O2 all day. Heart rate soared to 122. Temp climbed to 102.8. Had to give Tylenol. Cooling baths.

    Yesterday's urine output slowed to 35 cc/hour, which is just barely acceptable by ICU standards. Today, he's increased output to about 50 cc/hour, but he needs to open the flood gates to release all of these fluids. We've suctioned through his trache several times today, mucous is thinned by water. He's miserable.

    Temp is now down to 100.6; heart rate is down to 112; SATS are good, because he's on O2. We took him off of O2 for about an hour, but he couldn't maintain SATS above 86.

    Yesterday, I managed to cut Jon's hair (I used an electric clippers), which is quite an ordeal for all 3 of us. We have to pull his bed away from the wall, and Jim has to hold Jon's head so I can reach the back. Hair everywhere, so that's a clean up, followed by a major bath to get rid of the rest of the hair.

    He desperately needed a haircut, but the main reason I did it yesterday was to be prepared, if he ends up in the hospital.

    I managed to make potato salad, roasted beets, and Jim's Quorn roast for dinner. I've been on my feet all day/evening, with 5 more hours to go, before Jim gets up. Hot searing pain across my lower back, and my feet and ankles ache. Age is not my friend tonight.

    I don't know how Jim is going to sleep, since it sounds like we're in a war zone. The fireworks started at 7 p.m. and will go til past midnight. Lots of surrounding cities have fireworks, plus all of the amusement parks, and other private businesses. And our neighbors have been lighting "bombs" all day. Tonight, they're going bonkers. We aren't supposed to have fireworks in our neighborhood, but lots of people ignore our rules. I worry about fires.

    My nerves are frazzled anyway, so every time an explosion suddenly bursts, I jump out of my skin. We could be in the midst of a mass shooting, and no one would know. I will be so grateful, when tomorrow comes and the noise leaves.

    We're trying to celebrate, watching the Macy's broadcast. At least there is music and dancing. Earlier, we watched Independence Day with Jon. None of us are really in the party mood ...

    I trust and hope that all of you are having a much happier 4th of July than we are.

    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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    Quote Originally Posted by mg12061 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Wow how can it already be July?
    Happy anniversary Rose! Sounds like perfect gifts to me LOL. My husband and I have been married 30 years and all our gifts have always been very practical. In fact so are our birthday and Christmas gifts. We'll be spending the fourth getting more home repairs and such done for Kathleen's graduation party. Praying that the fluid retention will go away.
    funnylegs, I can tell you that Kathleen doesn't do well in the heat. It exhausts her. She avoids it completely when she can. It's hard for her to regulate her body temperature and she doesn't seem to sweat so I'm sure that makes it even harder. Hopefully your teacher has just decided the rest will be good for him and help his body to continue to heal.
    We've had a very busy couple weeks. Vacation was amazing as always. Great weather and so much fun with friends who feel like family. The group we go with has grown to 54 people (kids and adults). I did go with my closest friend(she's the woman in the graduation picture with Kathleen, she walked her up to the stage) one evening to Cape May for the first time. Had dinner and shopped.Now we're working on getting the house ready for her party. She will start going in to read to kids at summer school next week. We may go back to the personal trainer she worked with a few years back.Working on getting my pictures and video ready to post. My son is working on a slideshow for her party too.
    Praying for good health and happiness for all my good friends here!
    Mary Gace
    Thank you Mary Grace! Your post makes a lot of sense. I don't do well in temps above 86. My nervous system just sort of goes "bleh" and I feel like I'm dragging my body around instead of walking so I go very slow and it is annoying. I kind of figured he might have some version of that plus he might also be unable to sweat or even process heat properly on his stroke side. He told me the part of his brain that got damaged has to do with sensory processes like touch and temp. Is the part of Kathleen's brain that regulates temp damaged too? I tried to watch the video but my browser does not open it. So sorry but congratulations again!

    Rose, I really hope Jon's condition improves. I watched fireworks and the Hot Dog eating contest on TV. A certain Chestnut got his title back.

    btw remember I posted about "Finding Dory", here is a very good article about how the movie handles disability correctly https://disabilityvisibilityproject....ective-access/
    Last edited by funnylegs4; 07-06-2016 at 07:41 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((Hugs to All)))))) ~

    I'm sorry I didn't respond to your posts in my last post. I was pretty absorbed in Jon's crisis, which did resolve by Tuesday (the next day). He came off of O2, and his vitals have returned to normal. His urine output has increased to normal, but he is still filled with fluid in his legs and torso.

    Our PT misinterpreted Jon's condition and advised us to call Jon's PCP and nurse. I think he thought that Jon had an infection. He basically said he couldn't help Jon. So now, I have to try to explain to him that we're dealing with fluid management issues every day, and we need guidance. We don't know what to do for Jon. Do we elevate his legs and cause fluid to go up, or use stockings, which push up fluid, or do we re-position Jon? We don't know what to do. We know how to manage his symptoms, but we want to stop this from happening.

    Very frustrating and stressful. But he's normalizing now, so we are grateful. He is still filled with fluid in his legs and torso, but he's peeing, and trying to have BMs.

    funnylegs4 ~

    I think it is wise of your teacher to take the summer off. Everyone needs a break now and then, and he has been through a traumatic brain injury, so he needs even more time to rest and relax. Teaching is a strenuous activity for the brain. It also requires a lot of time ~ syllabus creation, preparation, creating tests, grading tests, keeping track of grades for all students. So, he does deserve this time off, and I hope that it will result in helping his recovery and strengthening him.

    Thank you for the link for Finding Dory. That was very enlightening. I can't wait to see it now. Of course, I'll have to wait until it shows up on premium cable or Blu-Ray.

    I hope you're finding ways to keep cool.

    Mary Grace ~

    Your vacation sounds fantastic! With 54 people! Wow! Can't wait to see the photos and videos! How many folks will be attending the graduation party? Best of luck with your home repairs!

    Thank you for your positive energy and prayers, dear friends! Returning them to you ten fold!

    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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    Unhappy Seizures are back!

    ((((((Hugs to All)))))) ~

    Jon has been seizing every day for about a week now, usually at night around bedtime. However, today, he had one in the afternoon. These are partial seizures, either complex or simple. I'm not sure which one, or if it's a combination of the two. Hands clawed, lips pursed. Some staring. Lasts 4-5 minutes. Comes out of it talking.

    Today, he's been laughing. This could either be partial seizure activity or Gelastic seizures. While the sound of his laughter is delightful, the reason for his laughter is concerning.

    Regardless of what type of seizures these are, they are happening.

    Why?

    With our detective hats on, Jim and I have pondered the possibility that Jon's increased urine output is dumping his seizure meds, lowering his blood levels to sub-therapeutic. The seizures are occurring during peak levels not trough levels.

    Even with the increased urine output (peeing like American Pharaoh), he's still retaining fluid, and he's constipated. So maybe it's the fluid or the backed up bowels triggering these seizures.

    Or maybe it's a progression of his undiagnosed underlying condition, and it has nothing to do with anything else.

    We don't know to what we can attribute these seizures. But it doesn't matter really at this point, because we have to stop them. The only option is to increase his seizure meds.

    We're replenishing lost fluid, and we're giving MOM to prompt bowel movements. We are using positioning and lymphedema massage to release the fluid. We're doing everything we can to mitigate potential triggers.

    Our prayers are that these seizures will stop, and that they won't generalize into a tonic clonic.

    Tomorrow afternoon, a service tech is scheduled to visit to check out Jon's O2 concentrator. We hope we'll also get some needed supplies like trache masks, adapters, and tubing. So many times these past years, we have tried to discontinue the O2 concentrator, because Jon didn't need it. Within the last year, he's needed it numerous times. Maybe for just a day or two, but he needed it. So, I'm grateful that the System made it complicated for us to d/c the concentrator.

    That's right. I just praised the System for making things complicated for us. Never thought I'd say that in a gazillion years.

    It's always something ~ right now, it's seizures.

    Hoping that everyone else is having a good summer. Please check in with your updates. Your smoothies are waiting ~



    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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    OMG so sorry about the seizures! Praying that they will get under control soon. Funny what you can be grateful for! Please keep us posted.
    Mary Grace

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    ((((((Hugs to All)))))) ~

    A brief update ~

    The frequency and duration of Jon's seizures increased, so we increased Jon's meds. That seems to have worked, for which we are extremely grateful. I was worried that the efficacy of these drugs might be failing Jon after all of the years he's been taking them.

    Jon continues to be filled with fluid, but we are managing it (on our own, since Jon's therapist didn't feel that he could address Jon's issues).

    Jon's new nurse will visit on 7/29 to remove/replace his catheter. We pray it goes better this time than it did last time. She has to return on 8/3 to re-certify Jon for 2 more months of nursing service (silly, isn't it? His service is life time. He's a Palliative Care patient.). She will change Jon's trache on that visit.

    And we're waiting on Jon's insurance (Medi-Cal) to approve/authorize renewal of his G Tube feeding formula. Really? Jon has been tube fed since 2009. Still on Vivonex. Still getting 1500 cc/day. Nothing has changed. He's still alive. What is the damned problem?

    That's our story. What's yours? Please drop by for a visit and share your updates!

    Your is waiting ~

    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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