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Thread: Jim's Journey

  1. #341
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    The fact that they didn't see the blood result for an entire week is disturbing. Perhaps the lab made an error and not Dr K himself? That's happened to me. I feel your frustration because I'm in scheduling hell with my work which is why I didn't post much. Somehow when stuff goes wrong people yell at me when it's really the others who don't care, don't read their emails, or are incompetent. :( Whole fat yogurt does wonders for me keeping my weight where it should be(fast metabolism). Do you and Jim eat whole fat yogurt?? My apologies if I asked before.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  3. #342
    Distinguished Community Member Jeanie Z's Avatar
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    :) Rose I am sorry the blood results were delayed. I wish Jim was not in so much pain. I think a Fentanyl patch might be helpful along with the other pain meds he uses. I pray for you both and I think you are doing really well with it all. With love, Jeanie :)

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  5. #343
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    Default Transfusion Confusion

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

    callyflower ~

    My mom was addicted to Vicodin for diabetic pain. At that time, patients required a Compassionate Use waiver, as it was restricted. She had renal failure, possibly exacerbated by the Tylenol in Vicodin. So, I have a traumatic experience with it.

    So far, Jim is satisfied with the relief heís getting from Tylenol/Codeine. He takes one at a time spaced out over 10 or so hours. No more than 2 in 24 hours. Iím not keen on the Tylenol, because Jim has bladder problems. Heís having periodic lower back pain, which could be from laying on his left side, or from sitting on the hard toilet seat, or his kidneys. Plus Ascites. Etc. Ö

    Dr. K seems hesitant, because morphine ďis a very strong narcotic.Ē He doesnít want Jim to be sleepier than he already is.

    Nancy talked about a very small dose of morphine, which she says helps with respiration rather than depressing it. Sheís also talked about a Fentanyl patch. Neither of these options have been presented by Dr. K, so thatís why Iíd like her to chat with him, when she returns from vacation.

    Jim and I need to talk about whether he wants to go to Jonathanís room and use his bed and mattress. He prefers to stay in the living room, because Jonís room is in the back, and he wants to stay in the middle of the house, ďwhere the action is.Ē Moving Jonís bed to the living room is not an option.

    Jim actually tells me often that he is comfortable in his futon bed (the mattress is incredibly sturdy, not a typical futon mattress). Itís queen sized, and he has everything around him at his fingertips. Every time I straighten his bed, when heís in the bathroom, I find lots of kleenex, magazines, bottle caps, meds heís dropped, the remote, his nebulizer, etc. If we canít locate something, itís probably in his bed.

    When heís ready, heíll tell me. It may be too traumatic for him to be in Jonathanís bed. Weíll see.

    Thank you for your thoughts, and Iím glad that Vicodin has worked for you.

    funnylegs4 ~

    Iím sorry that youíre being hassled at work! Why are people yelling at you? Thatís not professional or rational. I hope that things smooth out for you soon.

    I donít know and may never know why Dr. K didnít read the lab results last Wednesday, the day after the labs were drawn. If I hadnít emailed him, he may have never seen them. And then what might have happened to Jim with the low Hemoglobin?

    I only know that someone messed up, and it wasn't Nancy or us. Jimís labs are always submitted STAT, so they should be done and out by the end of the business day after their taken. Nancy takes Jimís blood to the hospital, not a local lab like Quest.

    Jim was eating whole fat yogurt for awhile (I donít like yogurt, unless itís frozen). But the dairy congested him, and his sinuses hurt, so he stopped. He felt much better after he quit eating it, even though he loves Greek yogurt with fruit.

    Thank you for your support and suggestions.

    Jeanie ~

    Thank you for your prayers for us. Weíre doing the best we can, and itís prayer that helps us do that.

    You and Nancy agree on a Fentanyl patch then. Have you ever needed to use a Fentanyl patch or have had patients, who used it? I appreciate hearing othersí experiences with all meds.

    Youíre in our prayers too. So glad you got your van repaired. Have fun with your friend!

    TRANSFUSION CONFUSION

    A few minutes after 8 a.m., Dr.ís K assistant called and left a message that Jim had an appointment at 10 a.m. at the hospital for a blood transfusion. I saw her message at about 8:30.

    I ran down to Jim to tell him, and he rolled his eyes. ďThatís ridiculous! We canít do that in an hour! No! If this is so urgent, why didnít Dr. K tell me to go in last week? We need to go in the afternoon. Tomorrow. Not today.Ē

    Thinking that Nancy might be back to work today, I texted her, called and left a message for her, and then I called the team coordinator to ask if Nancy was still on vacation. Yes. So my idea to have her stop by today to do a CBC to check his hemoglobin was off the table.

    I called the assistant and told her we couldnít make that appointment. She was very sweet and understanding. When I asked for an afternoon appointment tomorrow, she said, ďOh, they do all blood transfusions in the morning, because it takes a long time. Type and cross match his blood. Then giving the blood takes a few hours. Ten is the latest time theyíll take you in.Ē

    Okay. So, tomorrow at 9:30 a.m., Jim and I will climb in the van, and Iíll drive us to the hospital, get valet parking, a wheelchair for Jim and weíll be off to the COU for a blood transfusion. I donít know what COU stands for, and neither does the assistant, but theyíll know in the lobby.

    Weíll go into the small admitting outpatient room, sign papers, then be taken to the COU.

    I asked the assistant for an order to do a CBC prior to the transfusion, since that result of 7.2 is a week old. We need to know what it is first. It could be lower or higher. That would make a difference in whether he has a transfusion and how much he receives.

    I told Jim, ďIt is one of two scenarios: 1. Your hemoglobin is 7.2 or lower. 2. Your hemoglobin is above the line, and you wonít need a transfusion. With scenario 1, we stay, you are treated, we come home, you feel better with new blood. With scenario 2, we come home early, we eat, you go to bed and nap.Ē

    Nancyís coordinator today remarked, ďNancy rarely ever takes a vacation, but the one time she does in 6 months, you need her! Iím so sorry.Ē

    I responded, ďNancy needs this vacation. Itís fine. Thereís a reason for this, and I have no idea what that reason is. But weíll get through it.Ē

    PREPARATIONS

    Jim is sleeping now after finally taking his T/C this afternoon. His pain was minimal and tolerable, but he wanted to nap.

    When he wakes up, Iíll give him a bed bath, wash his hair, and heíll shave himself.

    I have to pack our black bag:

    extra briefs, bottle of water, apple juice box (just got them for Jim today), maybe an Orgain shake, the iPad (I told him we could look at the shade for the sun through the patio in early morning, the pedal exerciser, and wine books on Amazon, and he thought that was a good use of our time.), alcohol wipes, heavy duty flu protection masks, his inhaler, some T/C, which heíll take before we leave.

    That bag is going to be pretty heavy. Iíve hauled it around many times now. Iím hoping to hang it over the handles of the hospital wheelchair, which Iíll be pushing all around the hospital.

    No time for my walk tomorrow morning, but Iím sure Iíll walk a mile or two tomorrow without it.

    Instead, I will shower and get ready (have it down to a science now).

    I have to numb Jimís port an hour before the draw and transfusion. I did call the assistant again today to ask her to inform the hospital that Jim has a port and cannot handle an IV. Draw and transfusion via the port only. She got it, bless her, so thatís off my list of worries.

    Iíll also have to hose down the van in the morning, because we have very wet, misty nights, and the van will be covered in dirty dew. I did that Sunday morning, when I went to the pharmacy and ATM. We are out of window cleaner fluid, which Jim used to replenish. So we have to wing it.

    I feel like Iím competing on a TV game show, where the contestants are elderly, have cancer and/or arthritis, and have to see how fast they can get their buns in a van to go to the hospital for a test or treatment. Geezers Olympics.

    Oh, and yes, we have to go in our van, because John is on a business trip in the midwest. Timing is everything. No Nancy. No John. Just us.

    I would have been the same last week, because Nancy started her vacation, and John was at a golfing tournament to support Wounded Warriors.

    So, Jim just woke up and I told him that Iím worried about him being able to go in the van tomorrow. He doesnít think he needs to go in. He wants to wait until Friday, so Nancy can draw his blood to see what his hemoglobin is. But thatís Friday afternoon, and we wonít know results until Monday probably. He figures heís gone this long with low hemoglobin, whatís another week. Ugh.

    Iím trying to persuade him to go via ambulance, but he doesnít want to do that. ďI donít need to go in an ambulance!Ē Of course, he just admitted that itís hard for him to walk to/from the bathroom sometimes.


    HERE IS WHAT I AM PRAYING FOR

    Jim is able to tolerate all of this.

    Jim agrees to go by ambulance.

    Jimís hemoglobin is actually higher, and he doesnít need a transfusion, so we can go home.

    I can manage helping Jim on my own.

    We wonít be left waiting and wondering what is going to happen and when.

    We wonít get the flu or a superbug.

    We both get a few hours of sleep tonight, before we have to go through all of this tomorrow.


    I wish I knew why this is happening.

    Thank you all so much for your love, prayers, support, and walking beside us on 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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  7. #344
    Distinguished Community Member tic chick's Avatar
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    hey rose ,

    I appreciate hearing others’ experiences with all meds.
    my mom broke her hip in april of 2014. she had alzheimer's dementia, had not been ambulatory for over a year, was in the end stages of dementia and her specific wishes were not to have any kind of surgery. when she went back to the nursing home from the hospital with the hip still broken, she was put on a three day fentanyl patch with morphine every four hours for breakthrough pain. by this time, i had already had her in hospice for over six months. if patients lived longer than six months, they just renewed the hospice contract for another 6 months.

    my mom did her fair share of sleeping, but when she was awake, she was alert and not in her usual state of paranoia. she had many good days, more smiles. in some ways (especially the absence of paranoia), i think she had a better quality of life until she died in august of 2014. i was never worried that she was getting heavy duty meds. she had a broken hip and was at the end of her life. i never wanted her to have another moment of pain at that point.

    i also notice that you feed jim a healthy diet that has a lot of fiber. that's mostly my diet, too. i'm sure you know that there are 2 types of fiber, soluble and insoluble. the insoluble goes thru the system and comes out pretty much the same way as it went it. i avoid corn because it causes me stomach pain because the body can't digest it. any kind of stress or emotional upset also causes me constipation. until i started eating 4 prunes a day (the magic number they say ) and also taking a stool softener a couple times a week, my constipation made me miserable. once, i had such bad constipation and nausea and a bloated stomach that i went to urgent care and the doctor there told me to go to er. of course they do heart tests, but they also took an xray and told me i was backed up. i remember you saying in a previous post that they could tell jim was backed up when they did xrays or scans on him, too. i hope you find an answer to jim's constipation. it's boggling that eating healthy can cause a problem that makes people so miserable.

    it was so beautiful reading your story of jim telling you how you make him so comfortable. you're there for him day after day. you are his constant, no matter what else is going on. my wish for you is that every once in a while, you could just get in the van and go someplace with jim for a couple hours. i know that's not possible now, but that's what i wish, anyway.

    thank you for sharing with us this remarkable blessing of love,

    jeannie (tic chick)
    Last edited by tic chick; 01-15-2020 at 03:59 PM.
    WE ARE BT!
    "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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  9. #345
    Distinguished Community Member Jeanie Z's Avatar
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    :) One of the times I had cancer I was in a lot of pain and I had 75 mg Fentanyl patch and over time I was able to reduce it to 25 mg. I liked that it did not make me sleepy or dopey. No real side effects. I could definitely tell when the patch was on the last day and glad to switch to the new one. Jeanie :)

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  11. #346
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    Ohhhh Rose. I am sorry that everything is just piling up on you. It always seems that our loved ones go into emergency mode at 5:01 on Friday afternoon when the doctor is on holiday, when the orders have been misplaced, when you or I have an injury ... the list goes on. Sometimes when we most need help and efficiency, that when just everything goes wrong. I am so sorry. Well, you have everything planned and what is meant to be will be. Also, you can only do what you can do. Definitely put the bag on the chair. Another thought is... if you call the desk at the cancer clinic and tell them you cannot push Jim's chair, would they send you down an orderly? This is something they should do because it is a patient transport/transfer from the lobby to the clinic. At least it would save you carrying the bag and pushing the chair. Every single bit of care they can offer BOTH of you, they should. I hope you both get a good rest tonight and please let us know how it goes at the hospital. 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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  13. #347
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    Default No Transfusion Today

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

    Jeannie ~

    Thank you for sharing your momís experience with Fentanyl and morphine. How wonderful that it worked so well for her and reduced her paranoia.

    Jimís constipation is related to Codeine. Prior to taking it, his bowels moved very well. Iíve tried to encourage him to return to his breakfast cereal with raisin, prunes, and dates, but his appetite often wanes, and it doesnít appeal to him. Heís into fresh mango and frozen pineapple chunks now. Pineapple is good for inflammation and can be a diuretic.

    Oh, how we wish along with you that we could just take a day to go to the beach and our favorite restaurant overlooking the ocean. We talk about it occasionally. It feels that that opportunity has passed us by now. But we do have beautiful memories.

    Jim and I do have a strong, deep abiding love, which has sustained us through the most difficult moments of our life together. He has always been the ďprotectorĒ of me and our boys. Now, Iím his protector. We always stand up for each other and are on each otherís side.

    Of course, like every marriage, weíve had our moments of disagreement. Our life together has been extraordinarily stressful, so naturally, sometimes it gets to us. But we work our way through it, knowing the foundation of love, trust, and faith we have.

    It makes us feel very good to know that our story of love has touched your heart and spirit. We thank you for the blessing of your love and support and for sharing with us.

    Jeanie ~

    Thank for sharing your Fentanyl patch experience. It sounds like a very plausible option for Jim, based upon what Iím learning from you and others.

    Iím not worried about dependency with Jim. He loathes taking any medication, so heís careful with what he does take. He needs pain relief, which will be effective, and Fentanyl is starting to look like a possibility.

    Iíll discuss it with Nancy and Dr. K.

    Hope youíre having a wonderful time with your friend!

    Donna ~

    The transfusion was scheduled for today, but we didnít go.

    Jim's Decision

    Last night, I said to Jim, ďThis is your body. Your life. I think I know what you want to do. But tell me precisely what it is, and that is what we will do.Ē

    Jim said he did not want to go to the hospital, unless he had to go. Heís frustrated, because he realizes that he cannot walk out to the van and climb in and out of it. Heís not happy with the idea of going in an ambulance, because it makes him feel weak. But, he will go in an ambulance, if he has to go.

    He said he wanted Nancy to visit on Friday to draw a CBC/CMP, so we can find out his current hemoglobin level. If it is still low, he will agree to go by ambulance next week for a transfusion.

    Jim is disappointed that Dr. K didnít read his labs until I emailed him that we didnít have them on the portal. A week transpires, and then itís ďget to the hospital! You need a transfusion! You have an hour to get ready and get here!Ē

    Canceling Process

    So, I wrote an email to Dr. K, which I sent this morning. I told him that I am honoring Jimís choice to wait for Nancy to do a blood draw, and that heíd go in for a transfusion, if it was still low.

    I explained that it is a major ordeal for Jim to do anything right now. Maybe thatís because his hemoglobin is low, when everything else in his labs is stellar. But, heís also dealing with the effects of radiation, which Dr. S said could last a year, and includes extreme fatigue, and of course, cancer, and Codeine, and RA.

    I called Dr. Kís assistant and waited 10 minutes, as she had just arrived in the office. I felt bad canceling the transfusion, as sheíd worked so hard to schedule it for Jim yesterday. But life doesnít always go the way we plan.

    ďJim wants to know what his hemoglobin is now, since itís been a week. And, perhaps, if I hadnít emailed Dr. K about not having it in the portal, we might have gone another week without knowing Jimís hemoglobin Ö or a month, when his next draw is ordered,Ē I said to her.

    I wanted to say, but didnít, ďI know you and Dr. K have hundreds of patients. I only have one. I pay attention to every detail. I know everything about Jim.Ē

    Iíve said that to a few doctors and nurses regarding Jonathan and Michael. The reaction by the expression on their faces was always the same, ďhow do I argue with that?Ē They didnít say it to me, but I could tell they were processing it. The best doctors and nurses would say, ďGood point.Ē

    Doing the Right Thing?

    Dr. K replied to my email: ďOkay. Understand. After we get the repeat draw results, weíll go from there. If itís still low, we will arrange a transfusion sometime next week.Ē

    I was relieved. Jim encouraged me, while we waited for his response, ďDr. K knows who you are now. I saw the way he looked at you and spoke to you at our last appointment. He gets it. Heíll be fine with this, because he knows that youíre taking good care of me.Ē

    So, I just pray that I am taking good care of Jim. Should I be rushing him to the hospital for a transfusion, when I know the stress and pain he will endure to get there? All the lifting and movement will be painful for him, onto/off of gurney/bed/whatever. All of this, when we arenít certain that he still needs one?

    Heís not eating volumes of food, but heís eating and enjoying it. He had a couple of good BMs yesterday and last night. Pee is normal, no blood, good color, no burning. Vitals are very good.

    So, we just deal with it day by day now.

    Blood Draw Order

    A half hour after I spoke to Dr. Kís assistant, I received a message from the Lead LVN at the home health agency that she was going to come out today to draw Jimís CBC/CMP. Or, she could come tomorrow.

    I returned her call and left her a message that Nancy is Jimís nurse and will do the draw on Friday. This is a port draw, and LVNís donít do port draws.

    Then, I called our nursing team coordinator and asked her to schedule Nancy for Jim on Friday, and to contact the Lead LVN and tell her that Jim is covered with Nancy. She agreed.

    By noon, I was worn out.

    We are not adverse to a transfusion. I told Jim that if he does need one, heíll feel better and stronger after he receives it. He agrees. We just want to know if it is still necessary.

    Jonathan and Michael received so many blood transfusions in their lives. We have a large population of people to thank for their donations. During transfusions, we always prayed giving thanks for those, who donated their blood, and we prayed that they would have long, healthy, happy lives, and blood should they ever need it.

    Up to the minute, that is all our news Ö Film at 11.

    Thank you all for your love, prayers, support, advice, sharing, and for being with us every step of the way. We love you and pray for you and your loved ones always.

    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. #348
    Distinguished Community Member houghchrst's Avatar
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    I wonder Rose if when it is time for him to extend himself with a trip out that he take his pain meds maybe an hour before to make traveling a bit easier. Would it muddy blood work? Make him too tired?

    Praying for you guys.

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  17. #349
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    ((((((Hugs to All)))))) ~

    Chris ~

    Thank you for your prayers, and please know that you are in our prayers.

    When Jim started his radiation treatments, he took a Tylenol with Codeine an hour prior to the treatment. It helped. Then, one day, he forgot to take it, and he was without pain during treatment.

    His pain level is greater now, so he will definitely need to take T/C before anything, be it tests, transfusion, or seeing Dr. S on 2/10. His pain will be exacerbated from excessive movement, even being lifted onto a gurney. When I try to assist him getting into bed or standing up, he waves me off. I stand there waiting to help him, but he says it's easier for him to do it on his own. When Nancy assisted, by lifting his legs onto the bed as he was climbing in, he shouted, "Gently! Please."

    I wouldn't be surprised if Jim's having an RA flare from the stress of all of this. Plus his enormous gut makes him uncomfortable, when he moves.

    FEED HIM!

    Yesterday, his appetite was on the wane, and when he said he wasn't hungry this morning, I reminded him of how little he ate yesterday. "Dr. K is on my back about increasing your caloric intake. (not really) He gives Nancy orders to draw your blood, and me orders to feed you. So what do you want for breakfast, honey?"

    A "sloppy" egg, hash browns, and some veggie baked beans. A sloppy egg is when I let him have a little bit of runny yolk. He ate all but about a tsp of hash browns. That was followed by two really good BMs! So, YAY! Food works!

    Nancy texted yesterday that she would draw his blood tomorrow. She should be arriving home by now.

    DRUG WOES

    Yesterday morning, the drive thru at the pharmacy was closed, and I didn't have a mask, so I didn't want to go into the store. I went this morning, and the drive thru was open, but they didn't have Jim's albuterol for his breathing treatments. The assistant told me that the doctor's office circled the wrong drug, and the pharmacy caught it, because Jim's had the same prescription for 2 years.

    I actually asked for the refill on his albuterol and his T/C on Sunday, when I picked up his potassium. The assistant got right on it. So again, why, on Thursday, is this a problem? They've had 3 days to clarify this error. GAH!

    So, she asked me whether I wanted to take Jim's T/C today. "Yes! He's out! And he's getting very low on Albuterol."

    I'll have to pick it up Saturday, because I have to prepare for Nancy's visit tomorrow. Jim has enough Albuterol to last until then. I'll call tomorrow to verify that they have it ready.

    It's only a couple of miles from our home, and traffic is usually very light at 10 a.m. That's not the point. It's just another thing for me to schedule and have to do, which given our life, is cumbersome to say the least.

    The pharmacy folks are so nice to me, and she apologized profusely. They know we lost Jonathan, of course, and they know Jim's diagnosis. I just sighed, "This isn't the first thing to go wrong this week. I hope it's the last."

    So, we'll see what Nancy has to say tomorrow, and what the labs reveal. I'm praying that his hemoglobin is up from 7.2 to a level where he won't need a transfusion. It will be so hard on him to have to go through the lifting and traveling, etc.

    PAIN AND TREATMENT

    Of course, we understand this pain, as it was ever present for Jonathan and Michael. We dreaded every time they were placed on a gurney or MRI or CT scan table, or turned by hospital staff, who didn't know them and their frailties.

    I don't know where we're going from here. I haven't made the appointment for the scan and MRI, because, honestly, I don't think he'll be able to tolerate it. He says that he can, but he said the same thing about going to the hospital in the van. Then, he admitted he wouldn't be able to climb in and out of the van.

    I am praying for Divine Guidance as always. I'm trusting my gut, as always, but it's failed me in the past.

    Embrace each day as it arrives and give thanks when it departs. Dawn to dusk. Sunrise to Sunset. Thank you for yesterday, today, and tomorrow.

    Thank you all for your love, prayers, and continuing support and for walking beside us on our journey. It's so easy to feel alone sometimes. Be we aren't, and we know that. God Bless You.

    We 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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  19. #350
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Question Plans Interrupted

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

    Because we just can't have enough things go awry this week, Nancy texted last night that her Sister in Law is in the hospital in Nevada, where they went for a few days on vacation. SIL needs surgery, but it was postponed.

    Today, Nancy and I texted, and she called me several times with updates. Finally, we actually spoke. She and her husband were coming home, while SIL and brother stayed in Nevada. I don't know whether they will return to California, before they fly back to Canada.

    I'll find that out tomorrow, when she visits to draw Jim's blood.

    She wasn't sure what time they'd get home, and I told her to just wait until tomorrow morning. She's exhausted and needs a good night's sleep.

    When she mentioned this morning that the agency could send out a nurse for a peripheral draw, I reminded her of what happens to Jim's skin when he's poked. Unless she's doing it, which she did once in his hand for a recheck, he ends up with bruising up and down his arm, which lasts for months. Jim will refuse anything but a port draw, unless it's an emergency, in which case, he may also refuse.

    I wish that we had a capable and competent port nurse other than Nancy, but like wound care nurses, they're had to find.

    INSURANCE SNAFU

    Also, I had to contact our Medicare supplemental insurance regarding discrepancies in our payments. It took 25 minutes on the phone to resolve it. But we can't have problems with that insurance. I have to praise the Medicare system, and our supplemental carrier, because Jim's cancer costs a fortune, but we haven't been tapped for anything other than medicine co-pays.

    In fact, Jim is fond of telling nurses or anyone wanting to take his blood or give him medication or dye, "This port cost Nine Thousand Dollars! I got it for a reason."

    Someday far in the future, I may sit down for a few hours, when I have nothing else to do, and tally up the total costs of Jim's cancer care. I'm sure that the amount is astounding. I may even write an article to submit to various venues, describing the exorbitant cost of cancer care. I'll include all of the things I've purchased for him, like briefs, an alternating mattress overlay, assorted respiratory and urinary supplies. Thanks to Jonathan, we have plenty of stuff for wound care (and everything else).

    JIM'S STATUS

    Jim enjoyed a big pancake with raisins for brunch. He's still feeling full. His weight is stable. His gut is still 41" although it looks bigger. Vitals are good. Urine and BM output is good. Codeine is working to quell his pain.

    I asked Nancy today how to discern fatigue and sleepiness from that caused by cancer, by radiation (which Dr. S said could last a year and be worse than chemo fatigue), by Codeine, and that caused by low hemoglobin. She agreed that was a tough one. So, we need a blood draw to figure it out.

    MORE DRUG WOES

    Oh, and one more thing ...

    I called the pharmacy to ensure that they'd contacted Dr. K to get the right script for the Albuterol. They did contact him, but they hadn't heard from him. The pharmacist said that they circled the wrong drug. When I said that he really needs this for breathing treatments, and he can't go without it, she assured me that if the doctor hasn't replied by the end of the day, she will give me one box of vials until it's resolved.

    So, if it isn't resolved, at least Jim will get his vitally needed breathing treatments. But I'll make 2 trips to get the script filled. I do not mind doing this, of course, in fact, it's nice to be out and see another place besides our neighborhood. Everything is blooming, it's sunny after a night of rain (missed my walk this morning). It's just something else that I have to schedule.

    For some reason, we can't seem to have a smooth, unfettered path these days. But, everything will work out, because I'll make it work out.

    We truly thank you all for your love, prayers, support, encouragement, healing, positive energy, and friendship. We love you, and you and your loved ones are in our prayers. However repetitious that may be, it is absolutely true, and the best way that I know to say it.

    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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