Page 14 of 18 FirstFirst ... 49101112131415161718 LastLast
Results 131 to 140 of 179

Thread: Jim Has A Fever. ER Bound

  1. #131
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,711
    Blog Entries
    29

    Default

    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((funnylegs4)))))) ~

    You are definitely not ignorant! And I can certainly understand why you have that question.

    Steroids are typically used to reduce inflammation. Steroids are given to treat auto immune diseases, like RA, MS, etc. Jim has inflammation in his lungs from cancer, emphysema, and COPD. Steroids, as well as his breathing treatments, help reduce that inflammation.

    Of course, steroids have many adverse side effects, which is why Dr. K wants to wean Jim back to his maintenance dose of 5 mg/day, but only if Jim can tolerate that reduction.

    Jim's elevated liver function tests are concerning to Dr. K, and steroids can cause liver damage. It's a delicate balance.

    I'm glad that you asked. We all need to know as much as we can about everything to help others and ourselves.

    Love & Light,



    Rose
    Thanks for answering my question Rose! I guess the extra steroids kind of did Jim some good then, but as you say you need to be careful and monitor the dose. I wonder if the pneumonia Jim had awhile back made his inflammation much worse and this higher dose finally allowed the inflammation to go down.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  2. The following user says "thanks"


  3. #132
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,272
    Blog Entries
    1

    Thumbs up A Father's Day Gift for the World's Best Dad

    ((((((funnylegs4)))))) ~

    Actually, Jim recanted on taking 20 mg instead of 10 mg last week. But he can become easily confused, as he did when he took 17.5 mg. We're back to 10 mg now for a few days, then we'll try going down to 7.5 mg.

    He has the list I made for him for the dose each day, and I'm also making sure he doesn't take it, until I'm there.

    Jim's blood test results were posted to the portal today.

    WBC: 1.5 (down from 1.9 two weeks ago); Platelets 39, RBC, Hematocrit, Hemoglobin, are lower by small amount; liver enzymes dropped from 68 to 43, while ALT is still high, but stable.

    Dr. K noted: "blood work still low, but stable, no transfusions."

    To me, that says that transfusions are still on the table, which is good to know, if Jim chooses to have one.

    Jim is still off of O2, and walking to/from bathroom, kitchen, and even went out to the garage the other night to bring in water.

    We are just so grateful that he is doing this well, and he's feeling fine. No pain, no discomfort. Happy to be alive and here with me.

    I remember when he said he wanted to take a drive to the coast, when "I get better." I cautioned him that he'd need to be off of O2 and strong enough to do that. He believed he could, so he did.

    John texted today to check in as he faithfully does every week. He and his entire family (wife, daughter, sister, nieces, spouses) are spending Saturday night together in a resort hotel. Father's Day for all of the dads. I imagine golf may be involved, but I'm not sure. We have known this family since 1996, and every Dad in the family is just the best. There is so much love and friendship among the family, which is why we love them so much. They moved 2 doors down and immediately embraced us into their fold.

    Jim and I didn't have this kind of family, nor did Jonathan and Michael, with our extended families. We can't imagine being with our family members as much as John's family is. They do everything together and bring friends along. How blessed we are to be a part of their family.

    I ordered some Father's Day cards to give to Jim from our boys and from me. I haven't found the perfect gift, but I did get him a new heating pad and set of sheets, which I washed today. Not long ago, I bought him a new boomerang pillow. Does that count as Father's Day gifts?

    I'm feeding him healthy meals, always presented in an appetizing display on the plate and watching his sodium and sugar intake. That should count as a gift, right?

    He has an unlimited supply of everything. Tomorrow, I will go to the drive-thru pharmacy to pick up his Lasix and Potassium.

    He doesn't need a tie, or pajamas. We have thousands of DVD/Blu-Rays, quite a few recent ones, which he hasn't seen. I've seen them all numerous times as I watched them with Jonathan.

    He misses tomatoes, strawberries and blueberries, but with his WBC still low, we can't take a chance.

    I used to make pancakes on Father's Day, which Jim loves and the boys loved too, when they could eat them. Piled on the strawberries and blueberries, a little maple syrup and unsalted butter. Big fave with my men.

    Maybe I can create a new pancake for Jim for Father's Day.

    I'm just so grateful that Jim is here to celebrate this Father's Day. Our prayers are being answered, and Jonathan and Michael are at work.

    What better Father's Day gift could Jim ask for?

    Thank you all for your love, support, prayers, and continuing friendship. We love you and pray for you and your loved ones every day.

    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.

  4. The following 4 users say "thanks"


  5. #133
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    950

    Default

    Rose, It always brings a smile to my face to read some positive news. I'm very sure that all you do is considered a huge gift! Every day that passes with comfort and peace is a gift as well. Many years my husband and I didn't have the money to spend on each other so we never bought gifts for ourselves for things like mother's and fathers day or anniversaries. We knew in our hearts what we meant to each other and that was plenty. Our money was needed for other things more important. I think you've shown enough love and support that any monetary gift would pale in comparison! I hope you can share a wonderful father's day and celebrate all the gifts you have given to each other and been given by your boys.
    Pancakes sound wonderful! Kathleen doesn't care for syrup so I put a nut butter on her waffles and pancakes. She loves it!
    Mary Grace

  6. The following 2 users say "thanks"


  7. #134
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,272
    Blog Entries
    1

    Default Cancer, Grief, and the Gift of the Magi

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

    Today was enlightening. I learned from Jim that heís had back pain for most of the week, after he sat down too hard on the toilet. He didnít want to tell me, because he doesnít want me to worry.

    I bought new sheets for his bed and have been offering to change his bed since Thursday. He said ďyou have enough to do,Ē instead of ďI have back pain and want to just lay here.Ē

    He also decided to stop his Lasix today, because heís exhausted from getting up constantly all day and night to go to the bathroom.

    His BM output is also copious. I agreed that weíd try one day off of Lasix, but keep track of how often he goes to the bathroom. So far, itís half as often.

    It was not a good idea to stop the Lasix at the same time as we are reducing his steroid. He took 7.5 mg yesterday and today, down from 10 mg. Because he has back pain, we filled in the remainder to bring him to 10 mg this afternoon. Dr. K said that we should do that, if he has any problems with the reduction.

    If he doesnít improve on the peeing front, heíll get half his Lasix dose this evening and 1/2 potassium. Iíve begged him to keep up his fluid intake. But, if his bladder and prostate are preventing him from evacuating his urine, heíll have to stick with Lasix.

    Yesterday, I made his favorite spaghetti with fresh veggies and Field Roast Italian sausage. We had a salad from ďliving lettuce,Ē avocado, and olives, as well as some freshly made sourdough garlic cheese bread. One serving of all of that is equivalent to 1 cup of soup in terms of sodium content. He cleaned his plate.

    This morning, he wasnít interested in his usual cereal breakfast, turning over and going to sleep. He did eat it when he woke up. Then, he napped again. When he woke up, he wasnít hungry, and thatís when we had our conversation, and he brought me up to date on his current symptoms.

    Instead of spaghetti leftovers, he wants a bowl of soup and a sandwich, because his gut is full.

    I finally got to Jim about telling me everything all the time, when I said, ďI have spent my entire adult life trying to figure out what was wrong with Jonathan or Michael, because they couldnít tell me where they hurt or how they felt. But you can, and you donít tell me.

    Iíve begged you so many times to tell me everything. What donít you get about this? Iím your caregiver. I need to know everything to make decisions about your care.Ē

    My frustration, anxiety, stress, grief, everything was on display, and Jim apologized. I told him that not knowing what is happening to him isnít sparing me. Itís making it more difficult for me to take care of him properly.

    He has committed to keeping me informed. He finally understands.

    Mary Grace ~

    Thank you so much for sharing, and Jim and I are the same way about gift giving. I don't know how many Father's Days may await us. So, I just want to make this one special.

    Today, I wrote in all of the Fatherís Day cards I got for Jim. I order from Papyrus. They have unique cards. I found the perfect ones to give him from me and from Jonathan and Michael. Jim will be surprised, and there will be tears.

    Heíll also feel bad, because he didnít remember Motherís Day at all, until I told him that Sunday. Weíll get past that with a reality check (as in, I knew he wouldnít remember and why) and hugs and kisses.

    These are our ďFirstsĒ without Jonathan. It is immensely painful. But we will work our way through it together.

    Thank you all so much for staying with us on our journey, for your love, prayers, and support, and enduring friendship.

    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.

  8. #135
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    North Carolina
    Posts
    5,500

    Default

    Rose, so sorry to hear there are more problems for Jim. Is he still off O2? Have you had a chance to tell Dr K? He will be so surprised. I hope you both have a good Fatherís Day.

  9. The following user says "thanks"


  10. #136
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    1,147
    Blog Entries
    9

    Default

    Dear Rose,
    I am thinking of you and Jim today - it must be so painful to have this first Father's Day without Jon and of course without Michael. Jim is doing his best and he is being absolutely driven by a desire not to make you work harder than you have to. Anything he can do by himself, he will do. I am getting a clear picture of just how strong that drive is in Jim. Still, not telling you symptoms is not helping anyone! And I'm so glad that Jim finally understands that.

    We are all well. Nick, I, Jim and Nick's helper Francesca all met downtown - the boys got their haircut at a snazzy men's barber and then we all went to a British pub around the corner for snacks. It was a good day.

    Rose, I send you and Jim my love - I hope Jim stabilizes and has the right level of support - not too much, not too little. xoxo 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


  11. The following 3 users say "thanks"


  12. #137
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,711
    Blog Entries
    29

    Default

    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    Today was enlightening. I learned from Jim that he’s had back pain for most of the week, after he sat down too hard on the toilet. He didn’t want to tell me, because he doesn’t want me to worry.

    I bought new sheets for his bed and have been offering to change his bed since Thursday. He said “you have enough to do,” instead of “I have back pain and want to just lay here.”

    He also decided to stop his Lasix today, because he’s exhausted from getting up constantly all day and night to go to the bathroom.

    His BM output is also copious. I agreed that we’d try one day off of Lasix, but keep track of how often he goes to the bathroom. So far, it’s half as often.

    It was not a good idea to stop the Lasix at the same time as we are reducing his steroid. He took 7.5 mg yesterday and today, down from 10 mg. Because he has back pain, we filled in the remainder to bring him to 10 mg this afternoon. Dr. K said that we should do that, if he has any problems with the reduction.

    If he doesn’t improve on the peeing front, he’ll get half his Lasix dose this evening and 1/2 potassium. I’ve begged him to keep up his fluid intake. But, if his bladder and prostate are preventing him from evacuating his urine, he’ll have to stick with Lasix.

    Yesterday, I made his favorite spaghetti with fresh veggies and Field Roast Italian sausage. We had a salad from “living lettuce,” avocado, and olives, as well as some freshly made sourdough garlic cheese bread. One serving of all of that is equivalent to 1 cup of soup in terms of sodium content. He cleaned his plate.

    This morning, he wasn’t interested in his usual cereal breakfast, turning over and going to sleep. He did eat it when he woke up. Then, he napped again. When he woke up, he wasn’t hungry, and that’s when we had our conversation, and he brought me up to date on his current symptoms.

    Instead of spaghetti leftovers, he wants a bowl of soup and a sandwich, because his gut is full.

    I finally got to Jim about telling me everything all the time, when I said, “I have spent my entire adult life trying to figure out what was wrong with Jonathan or Michael, because they couldn’t tell me where they hurt or how they felt. But you can, and you don’t tell me.

    I’ve begged you so many times to tell me everything. What don’t you get about this? I’m your caregiver. I need to know everything to make decisions about your care.”

    My frustration, anxiety, stress, grief, everything was on display, and Jim apologized. I told him that not knowing what is happening to him isn’t sparing me. It’s making it more difficult for me to take care of him properly.

    He has committed to keeping me informed. He finally understands.

    Mary Grace ~

    Thank you so much for sharing, and Jim and I are the same way about gift giving. I don't know how many Father's Days may await us. So, I just want to make this one special.

    Today, I wrote in all of the Father’s Day cards I got for Jim. I order from Papyrus. They have unique cards. I found the perfect ones to give him from me and from Jonathan and Michael. Jim will be surprised, and there will be tears.

    He’ll also feel bad, because he didn’t remember Mother’s Day at all, until I told him that Sunday. We’ll get past that with a reality check (as in, I knew he wouldn’t remember and why) and hugs and kisses.

    These are our “Firsts” without Jonathan. It is immensely painful. But we will work our way through it together.

    Thank you all so much for staying with us on our journey, for your love, prayers, and support, and enduring friendship.

    We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    I'm so sorry Jim has back pain. Maybe that's why Jim took so much steroids? Maybe he wasn't confused, but self medicating based on symptoms? I have no idea. I REALLY WISH he had told you sooner. My gosh he is so stubborn! My prayers for the pain to stop and I hope you had a nice Father's Day despite the emotional and physical challenges.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  13. The following 2 users say "thanks"


  14. #138
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,272
    Blog Entries
    1

    Default A River Runs Through It


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

    Yesterday, I wrote a lengthy, rambling response, and, after reading it, decided not to post it. I thought I should give your eyes a rest. Well, hereís my feeble attempt at being brief today :

    Virginia ~

    Jim is still off of O2 and holding SATS between 92-96, with a heart rate in the 60s. He does get breathless and depends upon his breathing treatments to open him up. Usually, this occurs after heís been sleeping for a few hours. Iím sure itís sleep apnea. Heís had it since we first met, but he doesnít want to wear a CPap mask. This is frustrating for me. You can lead a horse to water, but you canít make him drink.

    I emailed Dr. K, and he said nothing about Jim being off of O2. He just wrote, ďlet me know when heís ready for the scans, and Iíll schedule them.Ē

    That surprised me, since I feel that Jimís improvements are significant. Perhaps Dr. K views it as a respite on the way to the end stage. He is a little hard to read, and Jim agrees with me. I think he treads carefully with his patients, because cancer is such a devastating disease.

    Donna ~

    So happy that your Jim had a nice Fatherís Day with Nick at the snazzy barber shop and pub. How is your garden coming along?

    Jim has always been driven to help me in every possible way. In fact, our first ďdateĒ was based upon that drive. When, as Michaelís bus driver, he picked up Michael the morning of graduation (not for Michael, but his school), Jim said heíd be happy to go with us to help with Michael and Jonathan. I accepted, because I was already madly in love with Jim.

    That afternoon, when I was picking up Michael at school, Jim told me that heíd committed to help another graduating student, who lived in foster care and had no clothes to wear to the ceremony. Jim bought the student clothes and was going to take them to him, help him dress, and then bring him to the ceremony. (Reason #1 why I was madly in love with Jim.)

    That evening, just as I was finishing dressing Jon and Michael to put them in their wheelchairs, the doorbell rang. There stood Jim, dressed in brown slacks, a buttercream sweater over a white shirt, with well polished brown shoes. I nearly melted (it was hot, and I was sweaty from getting the boys ready, but thatís not why!).

    The foster parents decided to take the student to the ceremony (YAY!), and Jim wanted to help me.

    Bonnie Raittís song, ďLetís Give Them Something to Talk About,Ē was popular at the time. When Jim, Jon, Michael and I strolled into the ceremony, we certainly did.

    Ok. I promised a shorter version. I took a turn down Memory Lane.

    The point is that Jimís mission has always been to help me by helping our boys, doing so much work around our home, grocery shopping for years and running all the errands. So, when he says it hurts him to watch me working all day and night for him, he means it.

    funnylegs4 ~

    Jim was confused about his steroids, as he is about many things.

    This morning he told me that heíd opened a new bottle of CBD capsules. I knew that he hadnít run out yet. So I checked, and he hadnít. He had run out of THC capsules. The bottles are the same, and they are labeled, and one is green, while the other is gold. He was confused.

    For a few days, he was taking THC in the morning and evening, which isnít our plan. I donít mind, except that the THC can sometimes impair his memory even more, and I want him well oriented, when heís awake.

    I didnít know that he was taking it in the morning, because he often falls asleep after breakfast for a few hours. Then I checked his bottle and asked him. He forgot about our plan.

    Jimís pain is gone since he returned to the 10 mg steroid dose. I guess weíre stuck with it for awhile. He actually didnít feel well with that small reduction in any respect. Appetite was less, energy was lower.

    The "off of Lasix" experiment lasted only one day, as Jim said he knew that he had to take it.

    FATHERíS DAY

    I gave Jim his cards, and he was very touched and appreciative. There were no tears, and he didnít mention Motherís Day. Two cards from me, and two cards from Jonathan and Michael together. They are proudly on display on the coffee table.

    Jim napped on and off. We watched a couple of movies on TMC. We ate left over spaghetti, a beet and avocado salad, and sourdough garlic cheese bread. At 10 p.m., we both fell asleep. Jim in his futon, and me on Jonís recliner. At midnight, we woke up, and I went to bed. Jim got up twice during the night to go to the bathroom.

    We did talk about Jonathan and Michael. We remembered happier times, and the places weíd traveled together. In fact, one of the movies we watched was ďA River Runs Through It.Ē Jim said heíd never watched it in its entirety.

    ďYes, you did. It was 1993, and we were sitting down for dinner. Jonathan was feeding himself, and you gave him a sip of your beer. He thought he was styliní! I was feeding Michael. The movie started, and it usually took us an hour to eat. When we were finished, we all sat in the living room and watched it until the end. Then, we took the boys upstairs, put them in their jammies, said their prayers, and turned on the music so they could go to sleep.Ē

    I have an uncanny ability to remember specifics about the circumstances surrounding certain movies Iíve seen. I canít explain it. Neither can Jim. He just nodded and said, ďThat sounds about right.Ē

    MOVING FORWARD

    The big First Fatherís Day is past, so now we take another step forward. My mind is overwhelmed with thoughts about the future and memories of the past, such that it is a struggle to stay in the present. Iím divided into thirds.

    I have a duty to plan for the future, especially while weíre both still able to make decisions together. I think about the disposition of our furniture, and then I think about what will happen to our family photos. I have no family left to whom to give them. No one wants our entire history in photos and the compilation of my writing and advocacy work.

    It will end up in the trash, because there is no one, who would want to keep it, store it, or treasure it.

    We have so much stuff. I donít know what Iím going to do with all of it! Jimís workshop, where he made Native American flutes is filled to the brim with tools and wood. What am I going to do with that?

    Okay. I am lengthy again. This is what happens, when I start thinking and connecting everything to everything.

    Thank you all so much for reading, and for your prayers, love, and enduring friendship. We love you and pray for you and your loved ones every day.

    Therapy session concluded. How much do I owe you?

    Love & Light,



    Rose

    Quote From "A River Runs Through It:"


    ďEventually, all things merge into one, and a river runs through it. The river was cut by the world's great flood and runs over rocks from the basement of time. On some of the rocks are timeless raindrops. Under the rocks are the words, and some of the words are theirs.
    I am haunted by waters.Ē
    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.

  15. The following 3 users say "thanks"


  16. #139
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    North Carolina
    Posts
    5,500

    Default

    Do what you can regarding talking to Jim about the disposition of things. But things that do not need his input there is no rush, just take your time. Hopefully, there is no rush about things that need his input, but that is an unknown at this point.
    Virginia

  17. The following 3 users say "thanks"


  18. #140
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    1,147
    Blog Entries
    9

    Default

    Oh, dear Rose. We want to hear it all!!!! Your small and big worries are our worries too. I wonder if a disability studies department at a university would be interested in your advocacy paperwork. I wonder if a local high school would want Jim's tools and supplies. In my community, we have a lot of refugees who need furniture. Maybe you do too? There is always someone who wants and needs our things - and our spirits infuse our objects. When we pass them on, we pass along their stories too and our histories. Our daughter Natalie is an expert in material culture - the study of 'things'. She knows that objects carry their owners' stories.

    I know what's best is what will happen. And everything will be infused with love. xoxo 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


  19. The following 3 users say "thanks"


Page 14 of 18 FirstFirst ... 49101112131415161718 LastLast

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.