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Thread: Jim Has A Fever. ER Bound

  1. #41
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    Dearest Rose,
    I can tell how exhausted you are in your words - you are still so eloquent, but I sense your 'beyond the pale' exhaustion through your words. I can't even imagine how emotionally fatigued you are, never mind physically. Dehydration can cause confusion for sure - you just have to see long distance runners near the end when their legs give out and they don't know which way to keep going - they wander off the track. It's incredible how much our bodies (especially the brain) need water.
    I am checking every day to see how you are doing and how you are managing.
    Rose, I think you did a beautiful job with your new signature here. I send you love always xox Donna
    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


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  3. #42
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    Default Crisis?

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

    Nancy visited this morning to draw Jim's blood via his port. It's ordered STAT. Results should be available in 4 hours.

    Jim was okay, until I took my shower a half hour before she arrived. When I came down to check him, Jim was shaking uncontrollably. I took his temp, and it was 101.4. He's been peeing a lot, so I suspected dehydration. He was loopy and saying things that made no sense at all, which Nancy witnessed.

    I gave him one Tylenol, but he had trouble swallowing it. Nancy suggested applesauce before giving the pill. It is a tablet, so I dissolved it in water, then gave with orange juice and applesauce.

    His SATS are 85 on 4 liters, and his heart rate is 114. His BP amazingly is 114/78.

    Nancy said we have to be concerned about too much fluid as well as not enough. She said the blood work will give us an idea of what's going on with him now.

    I think I'll give him more Gatorade to bring up his electrolytes. Nancy suggested this as well.

    I'm so worried about Jim. I have a feeling he'll be back in the hospital today if he doesn't stabilize.

    Yes, Donna, I am exhausted in every possible way, and the stress is enormous. But, I'll keep going for my honey, and I will make sure that he's comfortable and safe. Nancy said that's all I can do right now. It doesn't seem enough.

    He had a good day yesterday. I don't know what happened suddenly this morning to change all of that. I guess that's part and parcel for his condition. It's just so unsettling to see him this distraught.

    Thank you for your prayers, love and support.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  5. #43
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    Hi Rose,
    You’re very welcome! I’m so sorry Jim was shaking and so out of it. That’s very scary. I pray he feels better and his brain functions return to normal. I hate that Jim is in distress! I hope he isn’t having small strokes from a lack of blood flow or something. I’m also so sorry the case workers were so insensitive about the circumstances of Jon’s death. I think they probably have to ask those questions because they keep data on each patient so they are simply doing their job, but I find it annoying because they always seem to suspect the parent of the disabled person has done something wrong.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  7. #44
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    Oh dear, Rose. I am so sorry that Jim is so unstable. Maybe the blood results will give some idea of what's happening as Nancy said. It is so distressing to witness such suffering of someone you so dearly love. I will keep checking back tonight to see how you make out and in the meantime, I will pray.
    Donna xox
    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


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  9. #45
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    ((((((Hugs to All)))))) ~

    I wrote a long reply, lost my internet connection and every word I wrote. Grrr ...

    funnylegs4 ~ I don't think Jim's having a stroke. It's dehydration. It has happened every day, with the exception of yesterday.

    I gave him sips of water, juice, and Gatorade. Jim's SATS are now 91, after a breathing treatment, HR is 99, and temp is down to 99.9. So, I know this is dehydration.

    I want Dr. K and Nancy to help me manage this at home. I don't want to keep hauling him off to ER, or stressing over whether I'm doing the right thing. I am doing the right thing, I guess, since I've helped him rehydrate every time. I want a potassium supplement for Lasix. Blood work today is checking magnesium. If he needs that, then I want that at home too. And a saline drip at home.

    Why can't we just do that? I'm fed up with being told to go to ER. We can avoid ER, with the proper tools at home to keep him out of this situation.

    Jim was able to sit on the side of his bed, eat soup and a sandwich this afternoon. He was alert, not loopy. He doesn't remember asking me earlier to "get the teddy out of the toy box." He says some very strange things, when he gets dehydrated.

    So, what I'm doing appears to be working. But we should be able to prevent this from happening in the first place.

    Thanks to all for listening, loving, praying for and supporting us. We love you!

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  11. #46
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    You are doing a great job, Rose, you are far more responsive than any other care he'd receive elsewhere; no one would check him as frequently as you do and respond so quickly.

    I so hope the bloodwork shows something that will help turn this around. I agree, if this is dehydration, there's no reason he can't be treated at home to rehydrate or give him electrolytes or necessary vitamins/minerals.

    Perhaps this needs to be made clear with Dr. K. exactly what constitutes a necessary admission and what can be monitored and treated at home. It's important for everyone to be on the same page and you too need to feel comfortable with where the boundaries are. I don't want you to ever have cause to question your decisions, Rose. You will feel more comfortable with your authority if you clarify with Dr. K how to proceed forward.

    Is there a special meal that might tempt Jim to fully enjoy his food rather than feeling like it's a forced necessity? A drink that he might love?

    I send my best wishes to Jim and you. I want to tell you how strong you are, but I think you will just say that you are just doing what needs to be done and putting one foot in front of the other right now. Sending my love and strength to you both. I think your final arrangements sound beautiful and very fitting, I'm glad you shared that as it is something I'd like to seriously consider as well.
    Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.

    Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

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  13. #47
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    Default Normal!

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

    At 4:00, we changed Jim's briefs, and then he got up and walked to the bathroom to pee! Back to bed, I took vitals: SATS: 94 Heart Rate: 82 Temp: 98.6

    NORMAL!

    Then, it was tea time. Tea and a Scottish shortbread cookie. He's watching TV now.

    I gave him half of his Lasix at 20 mg, rather than the full 40 mg. I'm hoping that it promotes urination, but not too much. We don't have potassium as a back up yet, but I'll get that script by tomorrow. I'm going to email Dr. K.

    Jim doesn't remember that Nancy was here and took his blood. He kept asking me when she was coming over this afternoon. When I told him she was here at 9:30, he said, "No, she wasn't!" The gauze pad covering his port is the first clue. How scary is that?!

    This needs to get resolved, because we can't go through this every day. Maybe he should go to radiology once a week to have his belly drained of fluid? Maybe someone could tell me why this is happening suddenly?

    I can't describe adequately how tense and nervous I become, when this occurs. Am I doing the right thing? What should I do next? How long should I wait before I decide to take him to ER? And on and on and on ...

    Since I have nearly 50 years of experience caring for Jon and Michael, I have an instinct and a sense of what to do for Jim. But, I can't manage this on my own indefinitely. It needs to be resolved somehow. I don't need help in the home, because I can do whatever is needed. I need help from the medical professionals to make this stop or keep it at bay, so he doesn't have to deal with this daily.

    I'm fed up with "take him to ER," as if that is an easy thing for us to do. It's not at all. I'm fed up with having to give ER and the hospital in patient nurses the same information over and over and over, when he has a chart and has been there so many times.

    It's also a lot of walking for me to get to the Cancer Unit, and I carry his heavy bag with stuff for him every time I visit. (I've only done this once ~ last week ~ and only for a couple of days, but that was enough to remind me how much work it is to be at the hospital. Not to mention arranging for an ambulance and all that ambulance travel entails there and at home.)

    Jim is ill, and it isn't about me, and yet, it is. Because I am his wife, caregiver, best friend, the love of his life. I'm old, bent over in pain, and I'm grieving for our children, as is Jim. I'm the one, who runs the show, and Jim needs me. So, I do need consideration and all of the help that Jim can get will help me.

    For now, we focus on the rest of tonight to keep Jim out of danger. Generally, once he gets through it to his normal place again, he's okay until the next day.

    What a journey this is!

    THE BUTTERFLY

    As I was writing this post, I paused to look out the window. A beautiful yellow butterfly flew in our yard around Michael's waterfall, then up into and all around the trees on the greenbelt, back into our yard, back to the trees, over Jim's workshop and then to the West toward the sunset.

    Hello, my beloved Jonathan! Hello, my beautiful boy! How I miss you and love you! Thank you for watching over your dad and me. I know you're free and happy with Michael. I rejoice for you and Michael! But I miss you so very much. Thank you for sending me the butterfly. I needed that so very much. I love you, my darling son ~"

    And off he flew ~

    Thank you all so much for staying with us and loving us. We love you and pray for all of you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  15. #48
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    ((((((SuzE-Q)))))) ~

    I was writing my post, as you posted yours.

    Jim's appetite is only affected, when his belly feels too full with fluid. He enjoys all of the food I make for him, even the boxed organic potato leek soup he had today. His appetite has been amazingly good, when he isn't feverish and delirious. He also enjoys his Orgain shakes, so he's drinking 1/2 of one per day. He'll get that this evening with his dinner. Super nutritious.

    I'm trying to get Dr. K on board with home care, and Nancy said she would call and try to speak directly to him. I will write another email to Dr. K tonight describing what happened today, and that this happens nearly every day. I'm working to get all of us on the same page. I just seem to be a few pages ahead of them.

    Oh, my friend, I have to tell you that I question every single decision I have ever made. Even when I feel that I am doing the right thing, as with Jim now, I still worry that I'm missing something, because I don't have the Big Picture. For example, allowing Jim to go to that facility. I should have known it wouldn't be a good place for him. I just go with my gut usually. It failed me then, because I was so exhausted, grief-stricken, still in shock, and utterly gobsmacked that morning to be told he was coming home, when I wasn't ready. Again, consideration for me there, giving him just one more day in the hospital, so I could get organized, would have been truly helpful.

    I'm glad that we inspired you to consider a Living or Eternal Reef. We wanted to give back to Mother Earth in gratitude for all She's given us. Before Jim and I met, I traveled with our boys all over the U.S., and Jim traveled all over Europe. We saw the grandeur of Earth in all Her splendor.

    Creating new life with our ashes just seemed a fitting gift.

    Thank you so much for your love and support, SuzE-Q, and for your kind and comforting words. Your are in our prayers.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  17. #49
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    You and I must be on the same page, Rose. Before knowing there was a second post, I was reading your first one right after mine and thinking you were actually REPLYING to mine, it was only after reading your follow up one that I realized you hadn't even read mine yet!

    Good to know food isn't the issue. Such a delicate balance between preventing fluid build up and adequate hydration. Yet such serious effects if a balance isn't maintained.

    Hopefully Dr. K will be able to provide some clarity for you.

    I wish you both a peaceful night!
    Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.

    Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

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  19. #50
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    Hi Rose,

    I 2nd what Suze-Q said. I meant to say before, the idea of your and your beautiful family becoming part of a reef is one of the best ideas I have ever heard! Simply beautiful! Your earthy bodies would forever becoming a living spirit of the earth/land and help others. I can not think of anything more perfect for you and your angels.

    Wow! I’m not happy Jim is dehydrated but I’m glad its just appears to be dehydration because dehydration has an easier fix compared to other brain issues. What is happening with Jim reminds me of something I read in a medical book about older people getting dementia like symptoms due to dehydration and/or malnutrition. I know people who have illnesses or conditions that effect their brain function at times like low blood sugar and the person will have zero memory of anything that happened when the episode was happening so I’m kinda not surprised Jim has no memory of Nancy’s visit. I had no memory of fainting. Somebody had to tell me what happened when I fainted, so I think that’s just a brain protective measure by the body. I’m glad the issue is not the food. So yes it must be a fluid issue. I also noticed that Jim seems to have declined in health immediately after Jon passed so perhaps some of the dehydration and loopy episodes are a direct side effect of grief. I know you said you are both in a grief process and are both stressed. I met someone who faints every time she is emotionally distressed and she said “Grief can be a physical emotion” so please make sure Jim is not holding in his emotions either or he will only get worse.
    Keep in mind Dr K knows you are grieving and thinks he is helping by suggesting the ER as he feels it would relieve stress, not realizing it has the opposite effect.

    A tip so you don’t lose your posts, save the posts in an offline word document and then copy and paste to the forum like I do.

    I have no doubt the butterfly is your Jon saying “It will be okay Mama.”
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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