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Thread: Jim's Update

  1. #781
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((callyflower)))))) ~

    Thank you so much for the hugs.

    I have several chins, and I'm holding them all up the best I can.

    But, truth be told, I am this far away from crying for hours.

    We got a notice from the DMV today that our renewal (due in November) is overdue. We need a smog check on the van, and Jim hasn't been up to it, or Jon's issues have prevented him from taking the van in for the smog check. When I said that I'd do it, Jim described the smog station as very difficult to get into and maneuver. He knows that I'm not adept at this with our van.

    So, now that's on the list again of things to sort out, along with the remaining O2 concentrator exchange, and ordering the rest of Jon's supplies, and Regional Center has some ridiculous form for me to fill out, except that I'm not a facility, and it doesn't apply to us. UGH!

    And, I'm just so afraid for Jim. So so so afraid.

    But, we'll get through it, as we always do. With lots of prayer and faith and the love of wonderful friends.

    Thinking of and praying for you too, callyflower, as I know your surgery is pending. Big Hugs and Chin Up to you too.

    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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  3. #782
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    Don't sweat the small stuff. The van, my friend, is miniscule. It will get sorted.

    Thanks for the well wishes for me. I really dread it. Two weeks in bed 23/7 await me. Sounds wonderful, until it's actually happening. Sigh.

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  5. #783

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    Sending prayers up for all of you!

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  7. #784
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    Default Jim Is In The Hospital

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

    Jim was admitted this afternoon to the Cancer Unit at our hospital.

    Initially, Dr. K said he would send Jim home with an antibiotic, but after re-reading the chart Iíve been keeping, he decided to admit Jim. He said that the continuing fever, even though it comes down for awhile, is concerning and needs to be addressed. Jim's WBC is still at 1, so the Neupogen did nothing for him.

    As we were waiting for John to pick up Jim to take him to the doctor, Jim was shaking uncontrollably. His temperature was normal this morning, and he felt fine. Then 45 minutes later, he felt awful again.

    Dr. K is ordering a bone marrow biopsy. Whether this will be done while heís hospitalized or as an outpatient is to be determined.

    Dr. K also told Jim that once heís back on his feet, ďweíre probably looking at having to do radiation on the tumor.Ē

    ďFor a few days,Ē is how Dr. K phrased this hospitalization. I hope that is the case, but it depends upon how he responds to treatment and test results.

    He also told Jim, as he often has, ďDespite your condition, you are generally healthy, which is in your favor.Ē Dr. K finds it surprising that Jim is so healthy, and yet he knows how well Jim eats and that he takes MMJ (per Dr. Kís recommendation last year).

    John is on board for helping me, regardless of what I need. He just told me on the phone, ďWhatever you need, if you need someone to talk to, or if you need me to pick up something for you, or help with Jon, Iím here for you.Ē

    He was going to come over this afternoon to help me pull Jon up in the bed, but we did a good job yesterday, when he turned him, and I dressed Jonís wounds (Jim didnít assist, as he is so weak). Jon has been sleeping this afternoon, and heís still up in the bed.

    We had to increase Jonís seizure meds, after his seizure last Friday evening, and he may be reacting to that increase with drowsiness now. His vitals are excellent, and heís doing well, thankfully, and I pray that continues.

    Tomorrow is Jimís 71st birthday, so I called the hospital to find out if he could receive flowers and balloons. The answer is ďyes,Ē so I called our florist and ordered a small planter with a few flowers and a mylar balloon. He will be surprised!

    And when I spoke to John and mentioned it was Jimís birthday, he said that he would visit Jim tomorrow and bring him a couple of balloons and some batteries for his CD player. Iíll ask him to take a photo of Jim on his phone to show to Jon, when he comes over to turn Jon tomorrow.

    Jim has called me numerous times today to keep me apprised. He is so exhausted, and Iím praying that once all of the falderal of being admitted (intake, nurse exams, etc.), he will be able to get some sleep. He has not been sleeping well at home. Heíll likely get respiratory therapy too, which will help his coughing.

    Generally, Iím holding it together, but Iíve cried several times today. Just canít help it, and thatís fine. Tears and laughter are stress reducers.

    Thank you for your healing prayers for Jim, and for your love and support.

    We love you!

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  9. #785

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    Dear Rose,

    I’m sorry to hear that Jim was admitted and I know how anxious you are with him in the hospital. I’ll be sending you lots of prayers and good thoughts that Jim will be home soon to you and Jon.

    Marcie

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  11. #786
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    Hi Rose,

    I'm glad he's finally been admitted. When I had neutropenic fever, I would also feel OK, but weak, in between the episodes of shivering. The way I understand it, the shivering is the body's response to the lack of WBC. Since the body cannot fight any pathogens with the WBC's, the body increases its temperature in an attempt to "burn off" any bad germs. Pretty amazing, when it's not you doing the shivering!

    I would venture to guess he will be in the hospital at least 3 days. They surely took blood for culturing and it takes 72 hours for those to be read. If something does show (mine were clear) then the appropriate medication will need to be given and that will determine if he can come home on meds or will need to stay for IV.

    Hopefully you and Jon will be able to rest adequately and not have any big issues while Jim is gone. Perhaps it's time to look into additional PRN help, as radiation will wipe out Jim as well. If you could find 2 or 3 more people to help, it would sure make things easier for everyone. Ask your home health office if they have a list of people. When I was working we always had a list for patients who needed additional help.

    Take care.

    C

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  13. #787
    Distinguished Community Member agate's Avatar
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    Wishing Jim a very happy birthday tomorrow! I hope it will be enjoyable even though the hospital is the setting.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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  15. #788
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    Rose, I'm so so sorry Jim is in the hospital on his birthday no less. :'( As sucky as being in the hospital is I have a feeling Jim is much safer there with the lack of immunity. The fact that Jim's birthday is tomorrow is a reminder that despite the struggles Jim is very much alive and made it another year. Maybe the radiation will shrink the tumor to a size the Opdivo can blast more efficiently. I will pray Jim does better than the doctor expects! I wish I lived there so I could visit Jim in the hospital and then help you with Jon.
    Last edited by funnylegs4; 01-23-2019 at 06:03 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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  17. #789
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    Quote Originally Posted by callyflower View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi Rose,

    I'm glad he's finally been admitted. When I had neutropenic fever, I would also feel OK, but weak, in between the episodes of shivering. The way I understand it, the shivering is the body's response to the lack of WBC. Since the body cannot fight any pathogens with the WBC's, the body increases its temperature in an attempt to "burn off" any bad germs. Pretty amazing, when it's not you doing the shivering!

    I would venture to guess he will be in the hospital at least 3 days. They surely took blood for culturing and it takes 72 hours for those to be read. If something does show (mine were clear) then the appropriate medication will need to be given and that will determine if he can come home on meds or will need to stay for IV.

    Hopefully you and Jon will be able to rest adequately and not have any big issues while Jim is gone. Perhaps it's time to look into additional PRN help, as radiation will wipe out Jim as well. If you could find 2 or 3 more people to help, it would sure make things easier for everyone. Ask your home health office if they have a list of people. When I was working we always had a list for patients who needed additional help.

    Take care.

    C
    Wow! That is indeed amazing! I never knew that. The body is remarkable. I'm sorry you had what Jim has and felt so weak in the process.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  19. #790
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    Oh, Rose. I am so sorry that Jim is in the hospital, that he's feeling weak, that his white count is so low and that you are alone with Jon, worrying. I pray pray pray that Jim have some much needed rest in the hospital with treatment for his cough (that alone could help with fatigue). Dr. K is doing his best and I bet that everyone Jim has met at the hospital loves him and will give him the royal treatment. I'm so glad too that John is ready to help with anything, anytime. I wish I lived closer my friend! I am thinking of you and praying. Sending much, much 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


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