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Thread: Jim's Update

  1. #851
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    Default Yawn ... Zzzzzzzz ...

    ((((((callyflower)))))) ~

    Thank you for your insight. Jim is back to his normal water consumption.

    Propofol is the drug that killed Michael Jackson. Yikes! Again, I say that Jim should be informed that he's going to be given these drugs, when the procedure is scheduled. Every patient should know as much as possible about any procedure, treatment or surgery before consenting to it.

    We have learned from past experience to tell the radiology department that Jim has a port prior to any tests. An RN, one who is well experienced with ports, is then scheduled to access Jim's port. The same is true, when Jim has his blood draws prior to appointments with Dr. K. Also, we numb his port at home, before any procedure. But we shouldn't have to tell them. He has this very large and accessible chart on the system's computer, through which they can verify everything about him.

    When Jim was hospitalized, various physicians came into his room, with his chart in hand, and each one asked Jim, "When did you have your last Opdivo infusion?" That was it, and then they left. Now that Dr. K has mentioned that Opdivo can sometimes reduce WBC, we can assume that's why they all wanted that information, which of course, is in his chart.

    Meanwhile, Jim's appetite is waning. He's hungry, but he has trouble deciding what he wants to eat. Today, he told me that he wanted Tofurkey breakfast sausages, which I haven't found at any of the 4 stores I use on Instacart. Our little organic grocery, which is about 25 minutes drive from us, carried it. I'm not going there and be away from home for nearly 2 hours for shopping. It's also flu season. So, no.

    So, I researched on line, and it turns out that no one carries it, because they don't make these sausages any longer. It's been so many years since Jim has had them, he forgets how long and that things change constantly. It's been 5 years since Jim did our grocery shopping.

    His next option was a Beyond Burger, but the package expired in early January. He decided on an Amy's burrito, with salsa and guacamole. He really likes my version of guac! YAY! He requested 2 burritos, but I suggested that he eat one to see how full he felt. One was all he could handle.

    There's a whole lot of sleeping going on here these days. Jim and Jon sleep most of the day and night now. I'm weaning Jon down on his meds slowly, perhaps too slowly, but I fear seizures.

    This sleeping sure cuts down on what I can do during the day. Laundry. Cleaning. Taking down Christmas decorations. Meal preparation ~ still haven't tried our new Cuisinart steamer. Giving Daisy a run.

    Jon missed his turn today, because they were both sleeping. John will be here tomorrow around noon for The Turning.

    How is your recovery going callyflower? Are you bearing weight yet? Sending lots of healing prayers your way~

    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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  3. #852
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    Propofol is a wonderful, very safe drug. You just don't want to be doing it at home without proper supervision. Propofol and versed would be considered "sedation" rather than "anesthesia" so maybe that's where the confusion occurred. I, for one, am very glad he had the meds.

    My recovery is going badly. I am losing faith in my doctor and I have an ugly, gooey incision and a boot I refuse to wear as it rubs on said gooey incision. I tried weight bearing for one day and have now backed off and am now doing wound care and some antibiotics on my own. I will contact the doctor (who seems to feel I am a wimp) via my portal tomorrow. I am still seething too much today.

    My new "guilty pleasure" treat is Morningstar Farm veggie sausage links wrapped in Pillsbury crescent roll dough and baked liked pigs in a blanket. Jim might like those.

    You should be sleeping with the others! Family nap time!

    Take care!

    C
    Last edited by callyflower; 02-09-2019 at 06:31 PM.

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  5. #853
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    ................
    Last edited by callyflower; 02-09-2019 at 06:30 PM.

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  7. #854
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    Here I have had Versed with Fentanyl for endoscopies and the cardiac cath. I feel no pain but can cooperate as directed.

    I am glad that Jim has gotten his appetite back and that Jon is sleeping.

    Cally, I am sorry that your incision is infected but since you started antibiotics on your own, how will they discover the organism? I hope it clears up and you can progress to weight bearing.

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

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  9. #855
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    Dear Rose,
    I'm so glad that the blanket is coming in handy - that's exactly what I hoped. I'm glad that Jim and Jon are getting some rest and I hope you are too! I wanted to chime in on propofol - it's a great drug. Nick had it for all his nerve blocks and for dental work as well. He's up and having dinner, ready for action about an hour afterwards. It's a light, quick acting sedation and very safe in the hands of medical professionals. Michael Jackson was self-administering. It's a beautiful sunny day here and we're just going to bring daisy for a walk in the woods. We went to friends' this morning for brunch and a jazz concert - that was fun! Now it's time to get outside. We're going to spend the afternoon with Nick tomorrow and Tuesday then on Wednesday we leave for Cat I. My suitcases are packed with presents for our friends there, especially the children at the children's home (orphanage). This year I'm bringing art supplies to do a project with them that involves special sun-sensitive paper. If you lay an object on the paper and place it in the sun and then run the paper under water, the silhouette of the object appears. It's a fun project and there's never any shortage of sun of course, so it seemed like a good idea to try. I'll let you know how it goes and send photos! Lots of love and hoping it's a good day at the Hacienda today. 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


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  11. #856
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    Rose, prayers as always for your family! I'm Jim is recovering but so sorry for all the discomfort and "damage" to the sight. So sorry they're just not checking the chart thoroughly! It's really that simple just read it and get the background. Maybe certain things could be highlighted by his dr. So it's not missed. Probably they're just "skimming" through it this way they should catch some things that are imperative they don't miss. Keeping the prayers coming in full force!

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  13. #857
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    ((((((Hugs to All))))))) ~

    callyflower ~

    Oh dear! Iím sorry that you have an infection. What are you doing for wound care? Betadine is a good option for cleaning and killing germs.

    After all that you have been through, how could anyone, especially a doctor, think that youíre a wimp? Has your doctor responded to your portal contact?

    Iím praying that this gets sorted out very quickly.

    We should probably move this conversation to your thread, so we can keep track of what is happening with you. You might get lost in this long thread!

    FOOD

    We ate Morning star products, when they were first introduced, and that was the only option. There was something about Morningstarís products that caused us to never buy it again. I canít remember what it was. I remember contacting the company once to ask a question, and the reply was rude.

    Our meat alternatives are Field Roast, Yves, Tofurkey, and Beyond Meat. For a long time, Jim was fond of Quorn, but heís lost interest in it the last year or so. Field Roast makes corn dogs, which I enjoy, but Jim doesnít. He likes their frankfurters and Yvesí hot dogs. I have made pigs in a blanket with both a few times. I slice them down the middle and add a slice of sharp cheddar. He also enjoys Amyís chili on hot dogs and fries.

    SLEEP

    I canít sleep in the daytime. If I do, I wake up feeling worse than when I fell asleep. Groggy and more tired.

    While they are sleeping, I do office work. Paying bills, gathering tax data, filing, charting, time sheets, etc. I make grocery lists and to do lists. I also have to be available to give Jon meds, put on/take off his food, give flushes, check his vitals, urine and bowel output, chart. And I need to be available to both of them, in case they wake up and need something.

    I also begin/work on composing my posts and catching up on emails. For the past month, Iíve been trying to organize my email, since Spectrum gave us folders. I had 40 pages of emails to file. Iím down to 18 pages now. Tedious, boring, but necessary, particularly for tax preparation. I ordered a ton of medical stuff for Jon and Jim in 2018. All deductible.

    I will post in your thread so we can keep the conversation going about your recovery. Iím concerned about you, cally. Healing prayers and positive energy on the way ~

    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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  15. #858
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    Rose, I am on the mend. The wound looks much happier today. I simply cleaned the incisions with sterile saline, applied steri strips and covered with gauze. I think there was more irritation and "pre-infection" so the antibiotics are more precautionary. Most bunion surgery patients are given them after surgery, but I wasn't.

    Today my surgical shoe arrived from Amazon and it fits well. No problems with pressing on the incision. And no word from the doctor yet. I am not too concerned, as things are moving in the right direction again.

    Thanks for checking on me. I think all will be just fine.

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  17. #859
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    ((((((Hugs to All)))))) ~

    ANN ~

    The instant I read Fentanyl, I thought of Prince and Tom Petty. Like Propofol, I understand that a small dose is likely safe. But not for everyone. Give one of those drugs to Jon, and Iíll bet heíd have a problem.

    This is why I strongly feel that prior to administration of any of these drugs, prior to even arriving for the procedure, the patient should be told what drugs will be given.

    The typical question is ďDo you have any allergies to any drugs?Ē Allergies are different than adverse reactions. Jim answered the allergy question with ďOpdivo.Ē Heís not allergic to it. He has the expected adverse reaction of RA pain, for which he takes steroids.

    Jonís dilantin interacts with most drugs. Thatís not an allergy. But it needs to be noted prior to scheduling a procedure.

    In addition to the allergy question, the patient should be asked, ďHave you had an adverse reaction of any kind to any drugs?Ē

    Itís surprising how many people may not get the distinction between the two, but given those two questions, it might help them.

    Jimís appetite is fluctuating. Heís still drinking a lot of water, although less than previously, and his belly has come down. Tonight, Iím going to try our new steamer. I chopped red potatoes, baby carrots, parsnips, and green beans. Iíll add sweet onion and garlic to the steaming to add the aromatics. Iíll then sauteí them in ghee and add some herbs. I hope it turns out well!

    Healing prayers on the way for you too, ANN ~

    Donna ~

    Is it time for Cat Island already? Who will take care of Daisy while youíre gone? I wish that I could! Sheíll be a different doggie, when you return. How long are you staying?

    I love your art project idea for the children! You always have such clever ideas, and youíre a fantastic teacher. I know that everyone on the island looks forward to your yearly visits. And I look forward to your photos!

    All our love and prayers for safe travels and beautiful weather ~

    Mary Grace ~

    Thank you so much for your prayers. Jim was very frustrated with the parade of doctors in his hospital room, all asking the same question and nothing more. At least they could have said something like, ďWell, sometimes Opdivo can cause low WBC, so weíre looking into that as possible culprit for you.Ē But no. Nothing. Iíll bet their charges will be on the next insurance report Jim receives.

    RAINY SUNDAY

    Weíre getting a lot of rain these days. Itís strange, since weíre used to the drought. For us it is cold, in the 40s at night and 50s to low 60s in the day.

    When I looked out our bedroom window this morning, the backyard didnít look wet, so I dressed for my walk. I opened the garage door to discover that the street and sidewalks were very wet. But I persevered being so very careful with every step. I needed to walk. I walked the streets (ha ha ha) instead of the sidewalks, because the streets have a rougher surface. My walk was very brief, but at least I exercised.

    John arrived at 12:30, and we turned Jon. His wounds look the same, maybe even a bit redder. However, he isnít leaking over his catheter! I canít explain this, unless itís the smaller catheter size.

    John will transport Jim to/from his appointment with Dr. K on Tuesday. Jim will take his shoulder bag with supplies in case heís hospitalized. We hope he isnít, but we want to be prepared. His main concern is that the food is so terrible, and heíll be hungry constantly. He canít just eat apple pie. He can only carry so much with him in his shoulder bag. I canít send food and Orgain shakes.

    Tomorrow, Jonís new O2 concentrator will be delivered, as well as his cases of formula, which I will have to lift, bring in, and stack by myself. Iíll also do Jimís laundry and pack his shoulder bag. I want to order from Instacart, but I may have to delay that. I have several phone calls I have to make regarding Jonís services.

    Never a dull moment here Ö

    Thank you all for your continuing love, prayers, support, positive, healing energy for us. You and your loved ones are in our prayers every day, and we give thanks for the blessing you are in our lives.

    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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  19. #860
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    ANN ~

    The instant I read Fentanyl, I thought of Prince and Tom Petty. Like Propofol, I understand that a small dose is likely safe. But not for everyone. Give one of those drugs to Jon, and I’ll bet he’d have a problem.

    This is why I strongly feel that prior to administration of any of these drugs, prior to even arriving for the procedure, the patient should be told what drugs will be given.

    The typical question is “Do you have any allergies to any drugs?” Allergies are different than adverse reactions. Jim answered the allergy question with “Opdivo.” He’s not allergic to it. He has the expected adverse reaction of RA pain, for which he takes steroids.

    Jon’s dilantin interacts with most drugs. That’s not an allergy. But it needs to be noted prior to scheduling a procedure.

    In addition to the allergy question, the patient should be asked, “Have you had an adverse reaction of any kind to any drugs?”

    It’s surprising how many people may not get the distinction between the two, but given those two questions, it might help them.

    Jim’s appetite is fluctuating. He’s still drinking a lot of water, although less than previously, and his belly has come down. Tonight, I’m going to try our new steamer. I chopped red potatoes, baby carrots, parsnips, and green beans. I’ll add sweet onion and garlic to the steaming to add the aromatics. I’ll then saute’ them in ghee and add some herbs. I hope it turns out well!

    Healing prayers on the way for you too, ANN ~

    Donna ~

    Is it time for Cat Island already? Who will take care of Daisy while you’re gone? I wish that I could! She’ll be a different doggie, when you return. How long are you staying?

    I love your art project idea for the children! You always have such clever ideas, and you’re a fantastic teacher. I know that everyone on the island looks forward to your yearly visits. And I look forward to your photos!

    All our love and prayers for safe travels and beautiful weather ~

    Mary Grace ~

    Thank you so much for your prayers. Jim was very frustrated with the parade of doctors in his hospital room, all asking the same question and nothing more. At least they could have said something like, “Well, sometimes Opdivo can cause low WBC, so we’re looking into that as possible culprit for you.” But no. Nothing. I’ll bet their charges will be on the next insurance report Jim receives.

    RAINY SUNDAY

    We’re getting a lot of rain these days. It’s strange, since we’re used to the drought. For us it is cold, in the 40s at night and 50s to low 60s in the day.

    When I looked out our bedroom window this morning, the backyard didn’t look wet, so I dressed for my walk. I opened the garage door to discover that the street and sidewalks were very wet. But I persevered being so very careful with every step. I needed to walk. I walked the streets (ha ha ha) instead of the sidewalks, because the streets have a rougher surface. My walk was very brief, but at least I exercised.

    John arrived at 12:30, and we turned Jon. His wounds look the same, maybe even a bit redder. However, he isn’t leaking over his catheter! I can’t explain this, unless it’s the smaller catheter size.

    John will transport Jim to/from his appointment with Dr. K on Tuesday. Jim will take his shoulder bag with supplies in case he’s hospitalized. We hope he isn’t, but we want to be prepared. His main concern is that the food is so terrible, and he’ll be hungry constantly. He can’t just eat apple pie. He can only carry so much with him in his shoulder bag. I can’t send food and Orgain shakes.

    Tomorrow, Jon’s new O2 concentrator will be delivered, as well as his cases of formula, which I will have to lift, bring in, and stack by myself. I’ll also do Jim’s laundry and pack his shoulder bag. I want to order from Instacart, but I may have to delay that. I have several phone calls I have to make regarding Jon’s services.

    Never a dull moment here …

    Thank you all for your continuing love, prayers, support, positive, healing energy for us. You and your loved ones are in our prayers every day, and we give thanks for the blessing you are in our lives.

    Love & Light,



    Rose
    I completely agree that Drs should ask about adverse reactions. That's so basic I don't know why they haven't. Anyway here's an interesting article by a writer with cancer that may interest you and Jim https://www.hollywoodreporter.com/li...column-1181487 My prayers continue!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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