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Thread: Jim Has A Fever. ER Bound

  1. #111
    Distinguished Community Member SuzE-Q's Avatar
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    Dear Rose,

    You sound like you've come to a place of peaceful acceptance, I was going to say because of your dream, but I see that this post of yours was written before your dream last night.

    So, perhaps you are on an evolution which brought you to a place where your dream could now enter, and it was the natural next step?

    Yes, certainly stats are only good for generalizations and can give only an approximation on a scale where each person becomes part of that average, but gives the individuality to mark our own point with our own particular intrinsic factors that ultimately factor into on which point we will eventually lay that can't be predicted in advance. For studies, for medication reactions, for prognosis. It is a guide but not particularized to our own unique construct and internal processes. Doctors can see patterns and may have a better sense of where on that line we're falling based on what we're experiencing.

    I feel bad that I stopped reading over here some time ago when Jim was doing so well and you were singing the high praises of MMJ. I had no idea that along the way, the tide had changed. I am very sorry that I did not know what you were continuing to deal with when you would pop over to the MS forum. I am sorry I was not here to support you more and wasn't more aware when we chit chatted on the MS forum.

    I am glad you reached a point where cleaning and taking care of your environment was of some importance to you. I agree, I too feel less cluttered mentally when I've decluttered my environment.

    Thank you for continuing to share your very personal journey with us.

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  3. #112
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Caution: This is lengthy. Iíve been composing it on and off for the past couple of days. Iím just trying to process everything. And take extra good care of Jim. Thank you for reading. Bless You!

    funnylegs4 ~

    Excellent news that your teacher friend is in less pain. I will continue to send healing prayers for him. You are a good friend, and he is blessed to have you in his life and on his side.

    It isnít time for hospice, as Jim has been functioning fairly well. But the Dr. K visit took the wind out of his sails, and he had a restless night with lots of trips to the bathroom. I heard him groaning at 3:30 Saturday morning and went down to check on him. He was wiped out. I gave him a breathing treatment. And another at 7 a.m.

    He improved all day Saturday and yesterday. Heís holding very good SATS on 3 liters now.

    Jim produced some brown urine a few times over the weekend. With his liver panel being less than stellar, I am concerned that this is the source of the brown urine. Jim said that heíd been drinking plenty, but I could tell by the amount of water still in his water bottle that he hadnít. I persuaded him to increase his intake, and now his urine is clean.

    Dr. K mentioned hepatitis yesterday, not the infectious kind, but the kind, which develops from medications. Given the amount of drugs Jim has taken, including dye for tests, itís no wonder that his liver is impacted.

    Life expectancy predictions can be accurate sometimes. My aunt was diagnosed with lung and liver cancer last year. Her oncologist gave her a 4 month timeline, and in 4 months, she passed. She lived in a more rural area in a small State, and she didnít have access to the quality of care available to Jim.

    Thank you so much for your continuing prayers, dear friend.


    Virginia ~

    I do feel that Dr. K was taking the opportunity of having us both together for the first time to address the future with us. Jim has to make decisions, and I need to know what they are (already do, of course). But Dr. K was facilitating that discussion with us. He meticulously built up to asking the hard questions.

    First the background, the good and the not so good, then, the lack of remaining treatment options, and his suggestion for a PET scan and brain MRI to rule in/out cancer.

    Confronting reality is harsh in a multitude of ways. Things have been improving with Jim, so we didnít want to have our positivity stomped on with ďwell, thereís this ÖĒ and DNR and hospice. But we have to face facts, and we must prepare.

    Dr. K has probably counseled many cancer patients and their loved ones about the end stage. He couldnít have been gentler, kinder, or more compassionate. I was truly impressed, and thatís saying A LOT, considering the many doctors Iíve met in my life.

    Iím sure that Dr. Kís suggestion of hospice was for me, as well as for Jim. He probably has children and canít imagine the pain of losing them. Especially given our circumstances of caring for Jon for 49 years.

    Most people canít even fathom parents providing care for that length of time. We were told this many times in ICU with our boys that most older patients with developmental disabilities come from out of home residential or acute care facilities, because their parents aged out, were unable to care for them, or died, before their children.

    Thank you for your blessing for John. Heís just incredibly wonderful to us. I truly donít know how we could have managed through Jimís cancer, Jonís needs, Jonís passing, and now this phase of Jimís illness without John. I know he will be beside us all the way, and he and his family will be available to support and help me always. I canít even begin to describe how grateful we are for John.

    Thank you for your continuing support, encouragement and prayers for us.



    SuzE-Q ~

    Infusion nurses have told Jim and me that heís their favorite patient. So, it was not a surprise to me that the valet said Jim was their favorite. Jim is very cordial, witty, charming, and kind. He isnít demanding, and he doesnít expect people to serve him. He knows exactly how it feels to be treated as ďless than,Ē so he respects everyone for the job they do.

    In so many ways, Jim is doing well, but in other ways, he is fragile and struggling. Lots of breathing issues, particularly with exertion. Things can change on a dime, as we well know, after unexpectedly losing Jonathan.

    I do feel that Dr. K was preparing us for the eventuality of Jim losing his battle with this despicable disease. Dr. K also knows and admits that the chemo and immunotherapy given to treat cancer can cause cancer, as well as other terminal issues with vital organs, such as the liver.

    Dr. K was sorry that Jim couldnít continue taking Opdivo, because he said, ďIt was working for you.Ē But the opposite side is that it caused other problems, which have now caught up with Jim.

    We believe that Opdivo extended Jimís life, as the only other option was Taxol (chemo), which has a litany of problems too. After his first Opdivo dose in 2017, the tumor shrunk in half. Both drugs were risky, so we went with the one that worked.

    We did take away the positives ~ the excellent absolute neutrophils, the stability of his WBC and platelets, as well as other good results with sodium, potassium, magnesium, glucose, etc.

    Jimís color is very good, no jaundice. But his enlarged belly is quite concerning. We now realize that this is liver-based, as Nancy had suggested.

    All we can do is what weíre doing.

    And, Jimís appetite is amazing. Saturday was Taco Night for us, and he scarfed back 3 large tacos with all the good stuffings. Last night, we tried the new Field Roast patties (delicious), with boiled red/buttery yukon potatoes and garlic butter, curried asparagus, and cauliflower risotto. He loved every bite. Weíve been through many rounds of loss of appetite with Jim, but now, heís always ready to eat all day and night. How can that be anything but a positive sign?

    Thank you for the Big Hugs!


    Mary Grace ~

    Thank you for thinking of us and sending us positive energy, and for taking the time out of your very busy life to support us.

    We cling to the positives, every single one of them. Today, we talked more about the visit, and I emphasized that Jim is doing well. I listed off ofall the ways that he was doing well: urine/bowel output, excellent vitals, incredible appetite, no pain, no headaches, no blurry vision (other than cataract surgery related ~ the implant he paid for to reduce floaties seems to be failing). He doesnít even complain of RA pain now.

    Just like Jonathan and Michael, it is hard for us to imagine that Jim wonít continue on as he is now for a long time. And, just like Jonathan and Michael, we realize that itís foolish to believe that we can defy the odds forever.

    Jim is not inclined now to want the PET scan and brain MRI. He declared, ďIím dying regardless of those results, because there arenít any treatment options left for me, even if/when it spreads.Ē

    I vividly recall when my uncle was dying of cancer in the late 1970s. He had chemo, and it made him very ill and created new problems. He told my aunt, ďIf Iíd known that I was going to go through all of this and die anyway, I would never have agreed to it.Ē

    Another aunt, my Godmother, fought cancer for 13 years. She passed just before her 90th birthday. She was offered various treatments after enduring way too many, and she said, ďAbsolutely not. Iím not going to die on the vine, but Iím not going to put myself through any more of that torture.Ē

    Just as Jim says he doesnít want to watch me caring for him and suffering, I donít want to watch him fighting to the point of exhaustion and suffering.

    One night last year, for whatever reason, I was feeling afraid about Jim dying. I caught him in the hallway, and I grabbed him and cried, ďHold me close.Ē At some point I sputtered, ďPlease donít leave me.Ē

    He said, ďIím not planning on doing that any time soon. Iíll stay as long as I can. But I donít want to create any more hardship for you.Ē

    Now that Jonathan has passed, things have changed. On the one hand, Jim knows I am bereft and need him with me as I grieve. On the other hand, Jim is probably relieved, because now, he wonít leave me behind with Jonathan to care for on my own. He worried about that constantly.

    All that we can do is just take each day as it comes, as we have always done, and keep moving forward as best as we can.

    Our Precious Angels are watching over us and will guide us through this path in our journey. Someday, some glorious day, we will all be reunited in Bliss.

    Thank you all so much for your love, prayers, and continuing support. You and your loved ones are always in our prayers.

    Love & Light,



    Rose
    Hi Rose,

    Thank you so very much!! I know my prayers and the prayers of others are what keep my teacher friend alive and functional enough to continue to work. He seems much better now. Heís medically fragile at times but always seems to bounce back to a good place and Jim seems to have this same type of strength in him as well. I think they readjusted my teacher friendís eye meds so he finally got relief. He is SUCH a blessing in my life!! He helps me now the way John helps you when I need him and for that Iím eternally grateful. I try to return the favor when I can. If he or I were ever to move away from our current homes I would hate not being able to see him in person with his ups and downs in health but luckily that is unlikely.

    Hospice re: I met a very nice woman yesterday(sheís a fan of my work) with a son who had disability somewhat like Jonís though I think he actually had CP and a few other conditions, so I told the woman about this forum and your story and she also adamantly agreed that it was NOT time for Hospice! Her son was put on Hospice and in his case they would not even correct simple things like dehydration or hunger. The Hospice workers just kept pumping her son full of Morphine which slowed his heart rate and ďliterally sat around and waited for him to expire.Ē so Hospice is really for the end of the end in her opinion. (I think I mentioned something to this affect earlier in the thread too) She was so so sorry Jon passed!

    Of course sometimes the predictions are right. But they are not gospel and everybody is different. Can you ask Dr K if Jim can take a natural liver cleanser if hepatitis is NOT the cause? Just a thought.

    I thought Dr K still thought radiation was possible hence him wanting to do the scans?? My mistake. Guessing Taxol is definitely off the table too? I did not know Jonís O2 was rented either. I adore your unconditional love for your boys and Jim and I continue to pray!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  5. #113
    Distinguished Community Member tic chick's Avatar
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    dear rose !

    jim and you have made important decisions as to how and when jim wants to stop treatment and what his final wishes are. i have read that you know that hospice is for people who have decided to stop treatment for their uncurable disease.

    i'm writing because when i read the last post yesterday night, i was very disturbed. i woke up early this morning to the sound of thunder and this post came into my head and it took me an hour to fall back asleep. i'd just like to give my experiences with hospice to balance what i think is negativity and ignorance about what hospice is.

    Quote Originally Posted by funnylegs4 View Post
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    Hospice re: I met a very nice woman yesterday(she’s a fan of my work) with a son who had disability somewhat like Jon’s though I think he actually had CP and a few other conditions, so I told the woman about this forum and your story and she also adamantly agreed that it was NOT time for Hospice! Her son was put on Hospice and in his case they would not even correct simple things like dehydration or hunger. The Hospice workers just kept pumping her son full of Morphine which slowed his heart rate and “literally sat around and waited for him to expire.” so Hospice is really for the end of the end in her opinion. (I think I mentioned something to this affect earlier in the thread too) She was so so sorry Jon passed!
    funnylegs, you say your friend's son was "put" on hospice. was he in a hospital, nursing home or hospice facility or at home? i ask because the family of a person have to be the ones to "put" a person in hospice. did this mother put her son in hospice? did the son have a feeding tube for food and a saline drip for hydration? did the hospice people come in and pull those out and put a morphine drip on him? i'm interested because hospice care people are wonderful nurses who work with a doctor and specialize in helping the family spiritually and emotionally while their loved one is dying. hospice exists not to make people die, but because people do die and hospice wants to help the family deal with the process and help in any way. i hope this woman reported what this hospice did to the proper authorities.

    i have had 3 experiences with hospice. first, with my mother-in-law. she was in a nursing home. she had pneumonia, went to the hospital, went back to the nursing home. she lost her appetite and started to lose weight. her pneumonia came back. she went to the hospital. her doctor said she had pneumonia in both lungs and sepsis from a uti spread infection. she was 93 and had dementia for 14 years. the doctor said she was dying, so my husband put her in hospice. she was semi-responsive. she didn't want to eat or drink. they put her on morphine and a patch for nausea. she was in respiratory distress. they don't give fluids to people with too much fluid in their lungs...it's like drowning. she died in 6 days.

    my mom was in a nursing home with dementia. i put her in hospice (signed a lot of papers), and the doctor thought she had six months left to live (the usual criteria for hospice care, but if the patient lives longer than 6 months, they re-evaluate and she remained in hospice). she hadn't been walking for 2 years. she broke her hip one day. hospice did not take away food and water from her, but she was well medicated for pain and taking her usual meds for congestive heart failure. she lived for 4 months after breaking her hip.

    my best friend's daughter was an alcoholic. she developed liver and kidney failure. her parents transported her across state to be at home and in hospice care. she came home on a friday. i was there and met the hospice nurse, a compassionate woman, non-judgemental. i also went to visit sunday to explain the pamphlets on alcoholism and how it causes death to the brother of the dying woman. the daughter died on monday at age 31.

    this web page: https://www.webmd.com/palliative-car...active-dying#1 explains the different physical signs of dying, how you know when a loved one is nearing the end. i think it's always good to be informed.

    thank you for reading and letting me share,
    jeannie

    p.s. i'd just like to add that a fellow mom with a child in my daughter's class in middle school was a hospice nurse. she said it was the most rewarding and happiest work she had done because her patients were able to choose what they wanted to do during their last months on Earth. the nurse baked wonderful pies for her patients and their families and i was the recipient of the most delicious piece of pie i ever had, strawberry/rhubarb!
    Last edited by tic chick; 06-05-2019 at 11:12 AM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

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  7. #114
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    Quote Originally Posted by tic chick View Post
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    dear rose !

    jim and you have made important decisions as to how and when jim wants to stop treatment and what his final wishes are. i have read that you know that hospice is for people who have decided to stop treatment for their uncurable disease.

    i'm writing because when i read the last post yesterday night, i was very disturbed. i woke up early this morning to the sound of thunder and this post came into my head and it took me an hour to fall back asleep. i'd just like to give my experiences with hospice to balance what i think is negativity and ignorance about what hospice is.



    funnylegs, you say your friend's son was "put" on hospice. was he in a hospital, nursing home or hospice facility or at home? i ask because the family of a person have to be the ones to "put" a person in hospice. did this mother put her son in hospice? did the son have a feeding tube for food and a saline drip for hydration? did the hospice people come in and pull those out and put a morphine drip on him? i'm interested because hospice care people are wonderful nurses who work with a doctor and specialize in helping the family spiritually and emotionally while their loved one is dying. hospice exists not to make people die, but because people do die and hospice wants to help the family deal with the process and help in any way. i hope this woman reported what this hospice did to the proper authorities.

    i have had 3 experiences with hospice. first, with my mother-in-law. she was in a nursing home. she had pneumonia, went to the hospital, went back to the nursing home. she lost her appetite and started to lose weight. her pneumonia came back. she went to the hospital. her doctor said she had pneumonia in both lungs and sepsis from a uti spread infection. she was 93 and had dementia for 14 years. the doctor said she was dying, so my husband put her in hospice. she was semi-responsive. she didn't want to eat or drink. they put her on morphine and a patch for nausea. she was in respiratory distress. they don't give fluids to people with too much fluid in their lungs...it's like drowning. she died in 6 days.

    my mom was in a nursing home with dementia. i put her in hospice (signed a lot of papers), and the doctor thought she had six months left to live (the usual criteria for hospice care, but if the patient lives longer than 6 months, they re-evaluate and she remained in hospice). she hadn't been walking for 2 years. she broke her hip one day. hospice did not take away food and water from her, but she was well medicated for pain and taking her usual meds for congestive heart failure. she lived for 4 months after breaking her hip.

    my best friend's daughter was an alcoholic. she developed liver and kidney failure. her parents transported her across state to be at home and in hospice care. she came home on a friday. i was there and met the hospice nurse, a compassionate woman, non-judgemental. i also went to visit sunday to explain the pamphlets on alcoholism and how it causes death to the brother of the dying woman. the daughter died on monday at age 31.

    this web page: https://www.webmd.com/palliative-car...active-dying#1 explains the different physical signs of dying, how you know when a loved one is nearing the end. i think it's always good to be informed.

    thank you for reading and letting me share,
    jeannie

    p.s. i'd just like to add that a fellow mom with a child in my daughter's class in middle school was a hospice nurse. she said it was the most rewarding and happiest work she had done because her patients were able to choose what they wanted to do during their last months on Earth. the nurse baked wonderful pies for her patients and their families and i was the recipient of the most delicious piece of pie i ever had, strawberry/rhubarb!
    Hi Tick Chick,

    I have absolutely nothing against hospice in general!!! (My family members have been on it, and it was a good experience which I believe I told Rose and others here in the past) and I completely forgot to type that in this person’s situation the hospice was done completely improperly. The son’s other family members had put the son on hospice against the mother’s wishes because he was severely disabled and they thought that meant he was dying BUT he was NOT actually dying so it was a case of severe ableism by the system more than anything else. My sincerest apologies for not being clear! I thought I had mentioned all that! Its best to research good hospice and not do it too early. I'm sorry these wonderful people in your life died but so glad they had such great hospice. Hospice can be a God send and a real blessing.
    Last edited by funnylegs4; 06-05-2019 at 12:21 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  9. #115
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    SuzE-Q ~

    Please know that you have no reason to apologize to me. I certainly didnít feel abandoned or anything of the sort.

    The MS forum is very active, and you all need each other, with so many members having serious issues, as well as the passing of dear Peg. I wish that I had more time to support each one of you individually, but I guarantee you that I pray for you all as I read your posts and many times throughout the day and night.

    Youíre here for me now, SuzE-Q. Iím facing uncharted territory with Jim, and of course, I am grieving for our children. Thank you for being here for me now.

    As for predictions, I must share this about Jim.

    Jim ~ Ever the Optimist

    Yesterday, Jim said to me, ďTen years from now, weíll be laughing about this.Ē I donít recall to what he was referring now, but the fact that he thinks both of us will be here together 10 years from now stopped me in my tracks.

    I printed out the post about my dream for Jim to read. I had told him the bare basics, as weíd had a busy day, and I wanted time to process it. I left it on the coffee table for him last night. This morning, I came downstairs to find him reading it.

    ďWow!Ē he said, ďThat was great! Iím so happy our boys visited you. Do you feel better, a little bit, now?Ē

    Later, as we chatted about the ocean, hills and valley setting of my dream, Jim said, ďWhen Iím stronger and feeling better, maybe we could take a drive to the coast and sit next to the ocean.Ē

    ďOkay,Ē I hesitated, ďwe can try that, when youíre off of O2.Ē

    ďYeah,Ē he smiled, ďLetís do that. Weíre going to do that.Ē

    Jim ~ The Odds Defier

    Jimís SATS are 97 this evening on 2.5 liters of O2. I knocked it down to 2 liters, and he doesnít need his breathing treatment. He is taking less of those each day. His SATS, when he was off of O2 for about 5 minutes after being in the bathroom and walking to/from was 90. Thatís a big improvement over a few weeks ago, when it was 84.

    He made his tea and toast last night, this morning, this afternoon. Heís walking to the bathroom on his own without O2. His urine is crystal clear. Heís less confused. Not coughing. His appetite is voracious.

    He told me last night that he wants to take a shower in the downstairs bathroom, after arguing with me about the shower head for months. I told him that Iím not strong enough to catch him if he falls or gets dizzy, and he assured me that heíll be fine.

    We were going to try the shower and him shaving himself today, but he fell asleep.

    Then, when he was awake, I had laundry, opening and sorting out boxes of orders (all for his needs) that had arrived, kitchen clean up from last night, swept garage and the front porch and stucco, so it doesnít get tracked in, gathered up all household trash and put out the bins for pick up, fed Jim two meals, tea and muffin, water, etc. Weíll see about a shower tomorrow. Iím a bit nervous, but he is gung ho.

    Clinically, Jim is in pretty good shape given his diagnosis and dire predictions.

    I think Dr. K had his presentation prepared before he saw us, and I believe that he was surprised to see Jim looking and feeling as well as he does. I think he fully expected Jim to continue declining and come in via ambulance. He should be used to Jim defying the odds by now.


    funnylegs4 and tic chick ~

    Hospice

    Thank you for sharing your experiences with hospice. I'm so very sorry for your losses.

    funnylegs4 ~ Iím so sorry that this momís son was placed in hospice without her consent or his need for it. Forgive me - Iím a little unclear on this - did her son die? What authority did other family members have over her as his Mother?

    tic chick ~ I appreciate the link, which was very helpful. Jim is nowhere near needing hospice, and heís improved significantly in just this past week. So, as I said above, I think Dr. K was expecting Jim to be in a much worse condition and had prepared to have the discussion with us.

    Michael was in hospice in the hospital for the 5 days he survived after extubation. His room was at the end of the corridor, a quiet location, large and open, with a view of the sunset. He remained on a saline drip, but his tube feeding was halted.

    When I objected to not feeding him, the nurse explained the reason and gave me a brochure about end of life hospice care.

    I believe that the morphine he was given, although small doses, hastened his passing. Iím glad he was there, because he had nursing care, as well as support from our wonderful hospital chaplain.

    Only 14 months later, Jonathan nearly died from a gangrenous twisted sigmoid colon. When he was released from ICU, he was put in a ward, with 3 elderly men. His surgeon was furious and ordered his transfer to the 5th floor. His room was two rooms down from Michaelís room.

    For the remainder of Jonís stay, Michaelís room was vacant. One evening, I heard beautiful violin music, and when I stepped out of Jonís room into the corridor, I saw a young woman and a young man playing the violin standing in front of Michaelís room. I burst into tears. That was such a difficult time for all of us.

    What About Emergent Situations?

    Jim and I need to have a conversation about situations like, when weíre at home, if he has dehydration again, does he want to go to the hospital? Or a heart attack, should I call paramedics?

    I know from experience that end stage is one thing, and a sudden, unexpected occurrence is entirely different. If Jimís record shows DNR, will he be denied, if I do call or take him to ER?

    I donít want to go through another household of firefighters, police officers, CSI, etc. But if heís not in hospice, and this occurs out of the blue (as things do), I canít sit by and watch him in pain, suffering.

    I need to find out about all of this, just in case, so I know what to do.

    As always, I thank you all so much for supporting and loving us, for your prayers, positive, healing energy, and for sharing our journey. We love you and pray for 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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  11. #116
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    SuzE-Q ~

    Please know that you have no reason to apologize to me. I certainly didn’t feel abandoned or anything of the sort.

    The MS forum is very active, and you all need each other, with so many members having serious issues, as well as the passing of dear Peg. I wish that I had more time to support each one of you individually, but I guarantee you that I pray for you all as I read your posts and many times throughout the day and night.

    You’re here for me now, SuzE-Q. I’m facing uncharted territory with Jim, and of course, I am grieving for our children. Thank you for being here for me now.

    As for predictions, I must share this about Jim.

    Jim ~ Ever the Optimist

    Yesterday, Jim said to me, “Ten years from now, we’ll be laughing about this.” I don’t recall to what he was referring now, but the fact that he thinks both of us will be here together 10 years from now stopped me in my tracks.

    I printed out the post about my dream for Jim to read. I had told him the bare basics, as we’d had a busy day, and I wanted time to process it. I left it on the coffee table for him last night. This morning, I came downstairs to find him reading it.

    “Wow!” he said, “That was great! I’m so happy our boys visited you. Do you feel better, a little bit, now?”

    Later, as we chatted about the ocean, hills and valley setting of my dream, Jim said, “When I’m stronger and feeling better, maybe we could take a drive to the coast and sit next to the ocean.”

    “Okay,” I hesitated, “we can try that, when you’re off of O2.”

    “Yeah,” he smiled, “Let’s do that. We’re going to do that.”

    Jim ~ The Odds Defier

    Jim’s SATS are 97 this evening on 2.5 liters of O2. I knocked it down to 2 liters, and he doesn’t need his breathing treatment. He is taking less of those each day. His SATS, when he was off of O2 for about 5 minutes after being in the bathroom and walking to/from was 90. That’s a big improvement over a few weeks ago, when it was 84.

    He made his tea and toast last night, this morning, this afternoon. He’s walking to the bathroom on his own without O2. His urine is crystal clear. He’s less confused. Not coughing. His appetite is voracious.

    He told me last night that he wants to take a shower in the downstairs bathroom, after arguing with me about the shower head for months. I told him that I’m not strong enough to catch him if he falls or gets dizzy, and he assured me that he’ll be fine.

    We were going to try the shower and him shaving himself today, but he fell asleep.

    Then, when he was awake, I had laundry, opening and sorting out boxes of orders (all for his needs) that had arrived, kitchen clean up from last night, swept garage and the front porch and stucco, so it doesn’t get tracked in, gathered up all household trash and put out the bins for pick up, fed Jim two meals, tea and muffin, water, etc. We’ll see about a shower tomorrow. I’m a bit nervous, but he is gung ho.

    Clinically, Jim is in pretty good shape given his diagnosis and dire predictions.

    I think Dr. K had his presentation prepared before he saw us, and I believe that he was surprised to see Jim looking and feeling as well as he does. I think he fully expected Jim to continue declining and come in via ambulance. He should be used to Jim defying the odds by now.


    funnylegs4 and tic chick ~

    Hospice

    Thank you for sharing your experiences with hospice. I'm so very sorry for your losses.

    funnylegs4 ~ I’m so sorry that this mom’s son was placed in hospice without her consent or his need for it. Forgive me - I’m a little unclear on this - did her son die? What authority did other family members have over her as his Mother?

    tic chick ~ I appreciate the link, which was very helpful. Jim is nowhere near needing hospice, and he’s improved significantly in just this past week. So, as I said above, I think Dr. K was expecting Jim to be in a much worse condition and had prepared to have the discussion with us.

    Michael was in hospice in the hospital for the 5 days he survived after extubation. His room was at the end of the corridor, a quiet location, large and open, with a view of the sunset. He remained on a saline drip, but his tube feeding was halted.

    When I objected to not feeding him, the nurse explained the reason and gave me a brochure about end of life hospice care.

    I believe that the morphine he was given, although small doses, hastened his passing. I’m glad he was there, because he had nursing care, as well as support from our wonderful hospital chaplain.

    Only 14 months later, Jonathan nearly died from a gangrenous twisted sigmoid colon. When he was released from ICU, he was put in a ward, with 3 elderly men. His surgeon was furious and ordered his transfer to the 5th floor. His room was two rooms down from Michael’s room.

    For the remainder of Jon’s stay, Michael’s room was vacant. One evening, I heard beautiful violin music, and when I stepped out of Jon’s room into the corridor, I saw a young woman and a young man playing the violin standing in front of Michael’s room. I burst into tears. That was such a difficult time for all of us.

    What About Emergent Situations?

    Jim and I need to have a conversation about situations like, when we’re at home, if he has dehydration again, does he want to go to the hospital? Or a heart attack, should I call paramedics?

    I know from experience that end stage is one thing, and a sudden, unexpected occurrence is entirely different. If Jim’s record shows DNR, will he be denied, if I do call or take him to ER?

    I don’t want to go through another household of firefighters, police officers, CSI, etc. But if he’s not in hospice, and this occurs out of the blue (as things do), I can’t sit by and watch him in pain, suffering.

    I need to find out about all of this, just in case, so I know what to do.

    As always, I thank you all so much for supporting and loving us, for your prayers, positive, healing energy, and for sharing our journey. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Hi Rose,

    I’m a little unsure of the exact details but I think the disabled son(an adult) gave family members other than his mother control over hospice/end of life choices because of the family being separated…divorce maybe? But the other family members perhaps had not-so-good motives when the son became incapacitated by illness. I’m honestly not sure if the son is still alive…it sounded as if he survived and was very happy and grateful to the mom he survived…I don’t want to put my foot in my mouth without really knowing. I don’t want to give wrong impressions or hurt feelings on such an emotional subject. Please know that!

    Yes if the body is in the active process of dying food digestion stops and so having food in the system is painful. The thing I would want if I were dying is oxygen for comfort as my relatives had.

    I highly suggest you sort out the emergency guidelines immediately! You might be able to have a DNR and still have emergencies addressed but you have to be VERY careful about it because even medical professionals with the very best of intentions may not understand what your true desires are and accidentally do the wrong thing, thinking they are helping.

    Good idea printing the dream post to save it! I’m so so glad Jim is doing so much better! More prayers for that to continue! I think Jim has a lot of life left!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  13. #117
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    Thumbs up Fantastic New!

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

    Are you ready for some fantastic news? Not just good. Fantastic.

    Jim is off of O2!

    When I came down this morning to start our day, I noticed that his cannula was off, completely off, somewhere in his sheets/blanket. Immediately, I took his SATS. 93 and his heart rate was 68, so he wasnít struggling to get to 93.

    I challenged Jim, ďHoney, do you want to try going without O2 for awhile? Weíll keep an eye on your SATS and heart rate. If you feel you need O2, itís right there. Letís have a breathing treatment first, and then see how it goes.Ē

    ďIím game,Ē he replied, ďLetís try it.Ē

    I set up his breathing treatment, then took my walk. When I came home, I made his big bowl of ďdeliciousĒ cereal ~ Cascadian Farm Honey Crunch Oat, with raisins, diced peaches in peach juice, sliced almonds, banana, and coconut milk. He loves it.

    Then he took a nap for 1 1/2 hours, because heís up a lot during the night going to the bathroom.

    But Wait Ö Thereís More Ö

    When he woke up, he said, ďIím ready to take a shower. First a cup of tea. Then a shower.Ē

    And he did. It felt wonderful, after over 2 months of not having a shower. Of course, I was there, every second, and he sat on the top of the toilet, while I dried him from head to toe.

    He was huffing a bit, so I brought his inhaler, and that calmed him.

    Then, he sat in front of the bathroom sink, with a small mirror, which we borrowed from the living room, at his eye level, and he shaved.

    Still off of O2.

    While Jim shaved, I remade his bed, as the alternating pressure mattress overlay slides around a lot.

    Back to his futon nest, SATS, after all of that, were 92, and heart rate was 74.

    Resting on the futon, Jim was fine. No tightness in his chest, no effort in breathing.

    NANCYíS VISIT

    Last night, Nancy left a message that she was visiting today to do a UA. I texted her back later that Jim didnít need a UA, because his urine is crystal clear, abundant, no odor, perfect. So we cancelled her visit.

    She had forgotten that Jim also need to be recertified by the agency (every 60 days), and it was due. So she called today to schedule the visit just to sign the recert form.

    Jim and I had lunch while waiting for Nancy. I suggested that we not tell her about him being off of O2, and see whether she notices it on her own.

    Nancy is always so cheerful and sweet, and she was just so happy to see us. Some of you may remember when I posted about Nancy and Jim dancing in Jonís room, when she had visited to change Jonís catheter. I wish that I had a photograph of that moment. It was just so lovely.

    When she went to Jimís bedside, she said, ďOh Jim! You look good!Ē

    ďNotice anything different?Ē I asked after a few moments.

    She noticed his shave, his color, his haircut.

    ďAnything else?Ē I asked. She was baffled. So, I pulled the concentrator out from behind the futon. ďHeís not attached to this.Ē

    Nancy was just thrilled. We told her the entire story. Then Jim said, ďOh, my SATS are 96 now.Ē

    I was standing behind Jim, and I exclaimed, ďReally, Honey?! Oh, thatís fantastic!!! WOW!Ē I hugged him around his shoulders and kissed the top of his head.

    Hospice and DNR

    Then, we began discussing the hard stuff.

    Nancy absolutely agreed that Jim isnít ready for hospice, especially now. She talked about hospice care, and that antibiotics arenít given, nor food or water, when itís end stage. She assured us that she will guide us through the process, and she knows there will be signs that end stage is imminent.

    She told us that a DNR is always revocable at any time.

    I gave her my two scenarios: 1. Jimís at home, has dehydration, I take him to the ER, will they treat him? 2. Jimís at home, says, ďI think Iím having a heart attack,Ē and I call paramedics. Will they treat him?

    The answer is, ďYes.Ē

    First of all, they wonít know, unless they ask, as they did when Jim went to ER on 4/17, and as they did, when they were preparing to give Jonathan CPR. We can just say, ďNo, no DNR.Ē

    All About Jonathan

    Nancy was here to register Jim for home health just hours after Jonathan passed. I called her, while CSI was here to let her know, so it wouldnít be a shock, when she arrived. Of course, it was a shock to us all.

    Today, she shared with us her favorite memories of Jonathan. His precious smile, his hugs, the music in his room, his laugh. She recalled his abilities, when she first became his nurse over 10 years ago.

    It was wonderful to hear her memories and to know that she grieves with us for all that he endured in those years. She misses Jonathan, who she has always referred to as her ďfavorite patient.Ē

    While Nancy and Jim attributed Jimís improvements to my caregiving, I deferred to my belief that Jonathan and Michael are quite present and giving their dad the strength to carry on.

    Jim and I have had so many affirmations that Michael was participating in Jonathanís recoveries through absolutely death-defying illnesses. We have no doubts at all that they are working on Jimís behalf now. And mine too, of course, because any improvement in Jimís condition is cause for celebration and joy.

    John texted this morning to ask how we are and if we need anything. When I texted that Jim was doing well off of O2, John was ecstatic. He knows that Jon and Michael are watching over us. He believes this, as we do, with all of his being.

    Today, I also coordinated the delivery of Jimís port supplies for Nancyís visit next Tuesday to draw labs, and for pick up of Jonathanís left over cases of formula and his feeding pump. How conveniently that worked out, eh?

    KUDOS TO JIM!

    Jim said, ďIím sick of being sick and in bed. Iím going to get up and go the bathroom every time I need to go to get exercise and strength.Ē Off of O2 every time he did this, which is multiple times day and night, especially with Lasix.

    Jim did this. Jim made the commitment to do this, and he did it. This is will. This is courage. This is strength.

    This is proof to me that Jonathan, Michael, Jim and I are a unit. It took all of us, working together, to bring Jim to this point, where he can be independent of O2 and function.

    We donít know what will happen next. But for now, we have this, and we give abundant thanks.

    We love you and pray for you and all of your loved ones, and we give abundant thanks for the blessing you are in our lives, because we also know that your love and prayers are a major part of why Jim is doing so well now.

    Thank you so very much. Thank 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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  15. #118
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    Hallelujah!

    ANN
    There comes a time when silence is betrayal.- MLK

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    Wonderful news!

  17. #120
    Distinguished Community Member SuzE-Q's Avatar
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    I celebrate your great day with you and Jim, Rose!
    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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