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Thread: Jim's Update

  1. #961
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    Hi Rose,
    I'm relieved that Jim is feeling relaxed and that he's not coughing so much. He sounds better. I cringed when I read that you had to do taxes though - AND that there are so many phone calls to be made. Ugh, just what you need! I will cross all my fingers that the discharge planning actually picks up the phone and calls you - sometimes they are so stubborn (or lazy) and use the excuse that they only speak to the patient for 'privacy' reasons. That is infuriating. I hope it all works out!!!! I'm so glad that the shawl I sent is a comfort - I hope it helps you sleep! Sending love and prayers, Donna xox
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  3. #962
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    Default Hospital Nightmare

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

    Things have gone downhill. Last night Jim's urination slowed down, and then he had explosive diarrhea with watery and bloody stools. Non stop. Then the urine started pouring out of him.

    He asked for a condom catheter, but the doctor on duty refused saying it could "irritate his penis." He doesn't want an indwelling, as that's just another avenue for infection. Instead of the condom cath, he is jumping out of bed every five minutes to pee and poop. He's peed and pooped all over his bed, himself, the floor all night and day.

    I sent 6 pairs of underpants, he has one pair left. And his clothes are all wadded up in his satchel, thanks to one of his aides. I don't know what he's going to wear home. Will have to be a hospital gown, I suppose.

    What brought this on? Likely Vancomycin and Zosym. Both have warnings about watery and bloody stools, requiring immediate notification of your physician. They took him off of those, and the bowels are beginning to calm down now with less blood. But they wanted to put him on Fortaz, which has the same warning about bowels.

    Jim's nurse asked him if he was going to have his radiation treatment today. Seriously? He's peeing and pooping everywhere, how can he be still for 45 minutes on a scan table?

    At one point the aide told Jim to wipe up the floor himself!

    I've been on the phone all day with Jim. I called Dr. K and left a message that he needs to intervene. Jim wants to come home. Dr. PK texted Dr. K the other day. Another on call doc today told Jim that Dr. K was going to visit him today/this evening. Jim's getting impatient, so I called Dr. K's office again and gave a long, detailed description to the receptionist, William, who helped us the last time Jim was in the hospital. William said he would give the message to Dr. K and tell him that it's urgent.

    Jim is so stressed and upset, which of course is not good for him. I am stressed and upset, and that's not helping me either. He hasn't had any sleep. I know he's going to have RA pain from getting in and out of bed to use the bedside commode. And cleaning himself up after he can't make it to the commode.

    This is obscene!

    His potassium and magnesium were low, so he got a booster on those. Of course they are! He's pooping everything out of him!

    THE GOOD NEWS: His WBC was .9 yesterday, and this morning it was 1.1. So, it's coming up again thankfully.

    This has been a nightmare for Jim, and me too, because I'm going through it with him and am helpless, except to advise him what to say, ask and do.

    I haven't had a shower for days. I so wanted to take a shower today, but I have to sit next to the phone and negotiate for Jim.

    I made all of the phone calls today, and I printed out forms from the IRS site, and discovered that everything has changed. So now, what I've been doing on our taxes for 40 years is all different, which means I have to read and learn about the changes. I do not have time for any of this, nor the brain cells needed.

    That's the up to minute news on this horrible day. I'll try to update again later, but when Jim comes home, I'll be quite busy.

    Now I wait for the phone to ring.

    Love & Light,



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

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  5. #963
    Distinguished Community Member agate's Avatar
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    Rose, you probably have only a short time before the taxes need to be done? Is there any chance of finding a tax person who can do the calculations for you this time? It would cost but would be a lot cheaper than your medical care if you are overloaded to the point where your health gives way, and if I remember right, you already have some problems of your own that you've put on hold.

    Sometimes a person just has to spend whatever it takes to gain time and save energy. Just my opinion though.

    I hope that the explosive diarrhea, etc., will turn out to be "just" an effect of some of the meds Jim has been given. I'm sure he's very glad you're there for him, being an intermediary between him and his providers and just being present as someone who knows him and cares about him.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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  7. #964
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    ((((((Joan)))))) ~

    Thank you for your suggestion. I suspect that finding a tax person would be a challenge given that the due date is a week away. This is the busiest time of the year for them. I also can't leave the house to find a tax person, or take all of my data to a tax person.

    In 2001, I was executrix for my aunt after she passed. Her accountant offered to do my taxes. I gave him all of the information. He did them wrong, and I had to redo them. He charged me $600.

    I have all of the data compiled, and I'm ready to plug in the numbers. The problem is that the forms have changed, and I have to learn what goes where now. I can do it, I just need to not be in the midst of a crisis, so that I can concentrate.

    In my rather long experience, the last thing doctors look at to explain any symptom is a drug side effect or interaction with other drugs. That is the first place to look. The antibiotics Jim has been taking and the one they tried to give him today have this caution for side effects:

    Some side effects can be serious. If you experience any of these symptoms or those listed in the HOW section, call your doctor immediately or get emergency medical treatment:

    severe diarrhea with watery or bloody stools (up to 2 months after your treatment)
    He didn't have this problem, when he went into the hospital. His bowels were moving regularly and normally. No blood in the stool.

    The nurse wondered if it was something he ate. Well, everything he's eaten has been provided by their cafeteria/restaurant. So how many other patients have explosive diarrhea, who ate the same food he did?

    And, since he's been off of the two antibiotics, the diarrhea has begun to subside. But, as the warning says above, it could continue up to two months after having the antibiotic.

    I'm so disappointed in our hospital. Our ICU experiences have been fraught with problems, but nothing like what Jim has gone through this time and the last time in January in the Cancer Unit.

    I just called Jim. Still no word from Dr. K. Looks like he's stuck there tonight. He's afraid to eat anything in case it sets off the diarrhea again.

    I feel so badly for Jim. He said, "I just want to come home, be in my own bed, eat my own food, have a condom cath on so I don't have to get up to pee, be with you and Jon and away from people pushing these harmful drugs on me."

    I promised him that he will be out by tomorrow. I will raise Cain. Times a gazillion.

    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. #965
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    Oh Rose, this is just terrible - what a nightmare. I'm so so sorry for Jim and for you. Of course it is the antibiotics that caused these side effects. The one good bit of news is that Jim's white count is up. I hope Jim can come home tomorrow where he can be comfortable and get some rest. I am thinking of you all praying for a much better day tomorrow. 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. #966
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    Default Dr. K to the Rescue!

    ((((((Donna)))))) ~

    In the flurry of the day's activities, I missed your post. I am so sorry!

    Jim confessed to me today that he didn't tell me yesterday, when the diarrhea began, because he didn't want me to worry. How many times have I told him, "If you don't tell me everything, I can't help you"? Well, I said that again today, with the usual follow up, "I'm going to worry about you regardless. At least my worrying can be informed, if you tell me everything."

    But that is Jim. Worried about me, thinking of my welfare and well being over his own. Not wanting to burden me. All that he is enduring, and he's trying to spare me.

    Your shawl means so much to me, Donna. Every night/wee hours of the morning, as I recline on Jon's chairbed, I get all of the pillows aligned, including the Lakers' neck pillow that didn't work for Jon, try to find a comfortable position, with my feet hanging over the edge of the chairbed, and the last thing is covering myself with your shawl. It is the perfect size and weight. And every time I do this throughout the night, because I'm up and down a lot, I say, "Time for Donna's hug."

    Jim used the shawl a lot prior to my confiscation of it! One of his blankets was made many years ago for us by Pansy/Liz. It is fleece with angels on it.

    Just got a call from Jim that he wants to leave against medical advice, and I called his nurse to tell her why. She was quite snippy with me. I called Jim, and then his nurse entered and asked, "You want to go home? Why?" I JUST TOLD HER EXPLICITLY WHY!

    I could hear her, and she said that she'd get the discharge nurse to come in so he could sign papers.

    Jim and I hung up and a couple of minutes later he called again to tell me that Dr. K is making rounds in the unit and will be in to see Jim soon. GOOD!

    Just as I wrote that, Jim called, and I listened in on Dr. K's conversation with Jim. He was very calming and reassuring to Jim, and he understood why Jim is so upset. Then, Dr. K talked directly to me.

    He said he wanted to bring in the pulmo, who is replacing Dr. H, to set Jim up with a plan for his lung problems. Breathing treatments, O2, a new "puffer." Dr. laughed and said that he's not a pulmo, and it's been 20 years since he's been exposed to that specialty. I told him that I fully understand about specialties.

    Dr. K said to me and then Jim that if he releases Jim tonight, it would take him weeks to get the supplies/equipment Jim needs at home. A pulmo can get that done in a day or two. I told Dr. K that I had explained this to Jim several times, but he can't process it, because he's exhausted and confused.

    Dr. K said that he was going to put a stop to the Neupogen campaign. But he also told me that Jim's platelets have dropped to 40, and he might have to consider a platelet transfusion, if they don't come back up. He wants Jim to have a blood draw on Friday to check everything.

    "First thing in the morning, I will talk to Dr. L, the new pulmo, and we will get the ball rolling. Meanwhile, no Neupogen, and no more antibiotics, because I don't really think you have an infection. We'll just keep you fed and hydrated, until we can get you home with all of the equipment you need."

    Jim has told Dr. K about our family and my life of caring for our boys. He has told him about how well I take care of him. So, I just reinforced that with Dr. K tonight. Most families, when faced with a family member with cancer, or Alzheimer's or stroke or any condition, have no experience dealing with medical crises. I have nearly 50 years of experience in dealing with a wide array of medical crises with almost every member of my family.

    That is obvious when I'm advocating for Jon in the hospital. They know his age, and they remember Michael, so ICU knows I know what I'm talking about. But this is different, because no one knows us in the cancer unit. Jim is just another patient, who will be treated with the usual protocol, and his individual needs will be disregarded, as will any of our complaints against his treatment, until we bring in Dr. K.

    Dr. K also told Jim that Dr. D will not do radiation treatment on Jim until his lung issues are resolved. So that is now on hold.

    Just finished my final conversation with Jim for the night probably. He is more relaxed now that he's seen Dr.K, and he's trusting that the new pulmo will help him. He ate a baked potato and some mixed veggies.

    His nurse came in to tell him that she will be bringing in a condom catheter and bag for Jim soon. Thank you for listening, Dr. K.

    Once in place, Jim will be able to relax and get some sleep.

    Jon has been napping for 3 hours now. So, I'm in for a long night. And it's been a very very very long and trying day.

    At least, we've been heard and given compassion by Dr. K. He's already shown that he will keep his promises to Jim.

    I need to eat something now. I still haven't had a shower. I'm really ripe.

    Thank you all for listening and loving and praying for us. We send you all our love and prayers 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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  13. #967

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    Dearest Rose,
    I am so glad Dr. K was in, and has got the ball rolling in the right direction. The platelet transfusion if needed, will make Jim feel so much better as well. Meggie had blood issues the last few years, and she had to had transfusions of platelets, she felt so much better after. You are in my constant love and prayers my friend. Love to you and your handsome men.

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  15. #968
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    Hi Rose,
    I am so relieved that Dr. K finally saw Jim and that you got speak to him as well. He listened. He was empathic and responsive. He changed course according to Jim's pre-conditions and his choices for quality of life. Thank goodness and FINALLY! When anyone asks me what I think is wrong with our health and social care systems, I always say "that we have to fail before we are allowed to succeed." Why must we endure harm before we get help? This drives me crazy and I'm so sorry that Jim and you had to suffer so much before Dr. K listened and made a plan that is sensible and caring. I do hope that a transfusion helps Jim feel much better. I send my love and prayers prayers prayers, 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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  17. #969
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    Thumbs up Jim Is Home!

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

    Jim was discharged today. John brought him home at 2:00 p.m.

    A new pulmonologist visited Jim this morning, chatted with him, and listened to his chest. Because Jim passed a little test off of O2, involving a brief walk around the room, and maintained SATS of 93, he doesnít meet the criteria for having O2 at home. However, like Jon, just because he isnít oxygen dependent doesnít mean that his SATS arenít prone to drop necessitating O2. Without O2 in that case, itís off to ER.

    He did get a nebulizer and a script for Albuteral breathing treatments, as well as a script for Advair, an inhaler. The nebulizer was delivered to the hospital, which was nice, because we didnít have to wait for someone to deliver to our home.

    The shirt and pants Jim wore to ER were crumpled and stuffed in a plastic bag by one of his aides. He had nothing to wear home. His nurse showed up with a t shirt and sweatpants from their ďwardrobe.Ē A wardrobe of clothes left behind by previous patients? Donated clothes? I have no idea. Of course, they are clean.

    I made him a cup of tea and a cheese sandwich, while Jon finished off his work on his iPad. Jim is afraid to eat and drink after the explosive diarrhea he had for over 24 hours and the massive peeing that kept him jumping up and down off of the bed.

    After I talked to Dr. K last night about Jim being denied a condom catheter, Jim got a condom catheter within a half hour. He peed with such force at 2 a.m. while sleeping that the condom came off. Nurse and aide, bed change, bath, new condom. Jim forgot that we used to put extra tape around the condom with Jon to keep it on. Thatís a thought that should have occurred to his nurse anyway. At least that was better than peeing and pooping all over the floor numerous times, because the commode was too far away.

    Jim now has home health, which I expected him to have at this point. We are hoping that Jonís nurse will be able to take care of him, as she had indicated she would. Dr. K wants a blood draw on Friday, and she works that day, so I told the discharge coordinator to ask for her.

    Later the discharge coordinator called to tell me that a different nurse would be sent on Thursday to meet the 48 hour requirement. So I called our nursing team coordinator and left a message that we can wait until Friday for Jonís nurse. She is an expert in blood draws, infusions, and ports for both. Sheís also a member of our family after serving us for 11 years.

    Jimís blood work today revealed another climb in his WBC, now up to 1.9. His platelets are 32. Dr. K said to me and Jim last night that he might need a platelets transfusion.

    CALLYFLOWER AND TRACY ~


    You both have experience with platelet transfusion. Would you please share with me what it involves, potential risks, side effects, etc.? Thank you so much as this appears to be imminent, and I want to be informed so I can tell Jim what to expect.

    Shortly after finishing his sandwich, Jim fell asleep for an hour, then had a pee and made it to the bathroom, then back to bed for more sleeping. He is wiped out from the chaos, the constant insistence by all doctors and nurses treating him that he take Neupogen, when Dr. K had told him not to take it again after his severe reaction. Dr. K has now made a permanent notation in Jimís file ďNo Neupogen."

    The two antibiotics he was given, which caused watery and bloody stools, werenít even necessary, according to Dr. K, who said last night that he didnít think Jim had an infection. No fever, good BP, just having trouble breathing, because he has lung cancer, COPD, and has been given a ton of drugs and dyes in the last 2 years.

    Itís One Size Fits All medicine, and doctors donít want to even find the box, let alone look outside of it.

    Iím feeling some of the crash from the adrenaline coursing through me the last 5 days, now that Jim is home. He thinks itís easier for me if heís in the hospital. He couldnít be more wrong. He calls me every 45 minutes to 2 hours with yet another problem, which I then have to solve. I made two desperate phone calls to Dr. K yesterday, the last one as I fought off tears. He may have planned to visit Jim anyway, but I ensured that he knew how messed up things were with Jimís care to get him there.

    I coordinated his going in and coming home, and everything in between, and it has been exhausting.

    Jim feels better. Had SATS of 95, when he got home. His color is better. But he has lost weight. So, now I fatten him up again, as soon as he can tolerate more food and fluid.

    Jon is holding really good SATS thankfully, so no competition for O2 yet. John and I turned him, and the drainage on his backside was extensive. John was out of town over the weekend, and itís been 5 days since the last turn. I think that the wounds look a tad bit better, but we canít keep putting fungal powder and cortisone on him. Those are short term solutions.

    Thank you all so much for your love, prayers, healing and positive energy, and continuing friendship.

    We love you all and keep you and your loved ones in our prayers.

    Love & Light,



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

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  19. #970
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    Platelets are no big deal, and can be life saving. Jim is prone to bleeding if platelets get too low. My nose was spontaneously bleeding when I went into ER with neutropenia and a platelet count of 7. In my case it took three infusions over 4 days to get me safe again.

    The infusions themselves just take an hour or so. I had zero side effects, that I know of, as I was feeling pretty rough about then.

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