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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

    Comment


      No Transfusion Today

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

      Jeannie ~

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

      Jim’s constipation is related to Codeine. Prior to taking it, his bowels moved very well. I’ve tried to encourage him to return to his breakfast cereal with raisin, prunes, and dates, but his appetite often wanes, and it doesn’t appeal to him. He’s 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 “protector” of me and our boys. Now, I’m his protector. We always stand up for each other and are on each other’s side.

      Of course, like every marriage, we’ve 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 I’m learning from you and others.

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

      I’ll discuss it with Nancy and Dr. K.

      Hope you’re having a wonderful time with your friend!

      Donna ~

      The transfusion was scheduled for today, but we didn’t go.

      Jim's Decision

      Last night, I said to Jim, “This 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.”

      Jim said he did not want to go to the hospital, unless he had to go. He’s frustrated, because he realizes that he cannot walk out to the van and climb in and out of it. He’s 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 didn’t read his labs until I emailed him that we didn’t have them on the portal. A week transpires, and then it’s “get to the hospital! You need a transfusion! You have an hour to get ready and get here!”

      Canceling Process

      So, I wrote an email to Dr. K, which I sent this morning. I told him that I am honoring Jim’s choice to wait for Nancy to do a blood draw, and that he’d 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 that’s because his hemoglobin is low, when everything else in his labs is stellar. But, he’s 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. K’s assistant and waited 10 minutes, as she had just arrived in the office. I felt bad canceling the transfusion, as she’d worked so hard to schedule it for Jim yesterday. But life doesn’t always go the way we plan.

      “Jim wants to know what his hemoglobin is now, since it’s been a week. And, perhaps, if I hadn’t emailed Dr. K about not having it in the portal, we might have gone another week without knowing Jim’s hemoglobin … or a month, when his next draw is ordered,” I said to her.

      I wanted to say, but didn’t, “I know you and Dr. K have hundreds of patients. I only have one. I pay attention to every detail. I know everything about Jim.”

      I’ve said that to a few doctors and nurses regarding Jonathan and Michael. The reaction by the expression on their faces was always the same, “how do I argue with that?” They didn’t say it to me, but I could tell they were processing it. The best doctors and nurses would say, “Good point.”

      Doing the Right Thing?

      Dr. K replied to my email: “Okay. Understand. After we get the repeat draw results, we’ll go from there. If it’s still low, we will arrange a transfusion sometime next week.”

      I was relieved. Jim encouraged me, while we waited for his response, “Dr. 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. He’ll be fine with this, because he knows that you’re taking good care of me.”

      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 aren’t certain that he still needs one?

      He’s not eating volumes of food, but he’s 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. K’s assistant, I received a message from the Lead LVN at the home health agency that she was going to come out today to draw Jim’s CBC/CMP. Or, she could come tomorrow.

      I returned her call and left her a message that Nancy is Jim’s nurse and will do the draw on Friday. This is a port draw, and LVN’s don’t 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, he’ll 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 … 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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        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.

        Comment


          ((((((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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

          Comment


            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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

            Comment


              Oh man, what a week it has been for you and Jim, Rose! Honestly, it's the principle at work of "what can go wrong WILL go wrong." Hopefully next week with Nancy back, will be much much smoother. I really hope so. It is so frustrating about the insurance and the pharmacy. Well, you have bags of experience with these kinds of hiccups but that doesn't make them any easier in the midst of a crisis situation like Jim's cancer.

              All is pretty well with us. Nick lost one of his full time helpers before Christmas (he had a newborn baby and was finding the 12 hour shifts plus driving quite a distance to work just too much). Then on Thursday, his other full time worker went home sick. So right now he's fully staffed by wonderful people who know him, but who are temporary so that makes us nervous especially before we go away on the 29th to Cat Island. Anyway, fingers crossed it will all work out. We know that Nick will always be incredibly well cared for where he is - we trust the staff completely. It's the outings and quality of life that we provide if the temporary staff do not have access to get him out in the home's van. Only a few have their license to drive the accessible van. Usually if that happens we do the driving and Nick gets cabin fever if he's indoors for weeks on end - he gets pretty down. Anyway, that's niggling at me right now, but I trust that everything will work out and we totally do have the best team in the world - Jim and I just love them all. So I try to count my blessings and not worry but I guess it's a Mom's job to worry, right?

              Sending much love on this very snowy day in Canada. xox 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

              Comment


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

                One of the first things in the "Mom's Manual" is "you will worry all of the time about everything related to your child. Everything. All the time."

                Of course, you want Nick to have community outing opportunities, as he should have, so I pray that this full time worker recovers quickly, and that the temporary personnel can learn how to use the van and be authorized to transport Nick.

                Could any of your family members manage to transport Nick in your van?

                I can't believe it's time for Cat Island already! Yikes! Time flies. May all go well with Nick's care, and may you and Jim have lovely weather, and a peaceful, relaxing, well deserved vacation.

                I look forward to hearing about your adventures and all of the wonderful friends you have there.

                OUR UPDATE

                Nancy visited yesterday, and the blood draw went well. She came home specifically for Jim and another patient, who has a central line and TPN feeding. She’s an angel.

                John and I texted today, and I caught him up on everything. He immediately asked how he can help. He will transport us if Jim needs a transfusion. Jim feels strong enough to walk to John’s car, then we’ll use a w/c at the hospital, and then he’ll walk back into the house from the car.

                We pray that his hemoglobin is above transfusion level now, but this option is much better than an ambulance.

                Jim is eating better the past couple of days. Today, he even uncorked an Orgain shake much to my delight and is sipping it during the day.

                Bladder and bowels are moving well. Comfortable in bed, once he’s settled. I’m still finding treasures in there every time I straighten up his bed.

                We’re watching football, and we had a great time with the Chiefs’ game and so happy they won. We like the Packers and the 49ers, so I don’t know who we’re rooting for here. Regardless, we’re looking forward to watching the Super Bowl for the first time in many years.

                This afternoon, when his rib pain was returning, Jim opted to take his THC rather than the Codeine. So far, it seems to be working well on his pain. It definitely improves his mood.

                He wants “snacky food” while watching the game, so we’ll have an Amy’s pizza and some salad. It’s so wonderful to see him eating!

                Sending lots of prayers and love to you, Jim, Nick, Natalie, Alex, Daisy, and your entire family.

                Love & Light,



                Rose
                Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                Comment


                  Hallelujah for an orgain shake and a pizza! It made me so happy to read that Jim has a bit of appetite and that John and Nancy are back. Phew. I am so glad that you have some support. Now, my prayer will be that Jim doesn't need a transfusion! I spoke today with Nick's helper who was ill and she's back and sounding better. I hope everything will feel stable when we leave for Cat. Fingers crossed!
                  Love Donna xoxo
                  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

                  Comment


                    Transfusion Tomorrow at Ten, Film at Eleven

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

                    Donna ~

                    Prayers that all goes well with Nick's caregivers, while you and Jim are on Cat Island. I'm happy that his caregiver has returned, and I'll keep praying that all goes well for all of you.

                    Jim didn't eat much yesterday, but today's he's had half of his cereal/raisins/prune/diced peaches/coconut milk breakfast, and a cheese and Branston pickle sandwich. For dinner, Rose's Cafe is serving baked potatoes, fresh organic green beans, Nancy's avocado, with tomato and greens, and Gardien turkey cutlets with a s h i take mushroom gravy (it's a mix).

                    We need to fatten him up, because tomorrow is:

                    TRANSFUSION DAY!

                    Yes, Dr. K's assistant (different one than last week) called and left a message, while Jim was sleeping this morning. So, I fretted and left it until he woke up. He had a long night of coughing and peeing. He needed to sleep.

                    The message was that I needed to call her back. Just as I went to do that, she called again and left a message that Jim needs a transfusion. "He has to be at the hospital by 7:45 tomorrow morning."

                    Immediately, I called her back, and I explained why we cancelled last week, and that we can't possibly be ready by 7:30 to be there by 7:45. The latest time we can be there by their rules is 10 a.m. So, she called the unit, and they allowed Jim to come in at 9:45.

                    Jim's hemoglobin is the same as the last draw on 1/7: 7.2. So, clearly he needs this transfusion.

                    I texted John, and he said he'd be here at 9:30, and that he had talked with his boss about it, and she is fine with it. She knows our entire story, including our loss of Jonathan, which he said brought her to tears. She admires John for helping us, and she knows that he is a trusted, long term employee, who has done many great things for their company.

                    So, we're off to the hospital for a transfusion. As John said, "This will make Jimmy feel a lot better. He needs this, I think."

                    Yes, he does. And I agree, and so does Jim.

                    CT/MRI SCHEDULED

                    Realizing how close Feb. 10 is, when we have our appointment with Dr. S, I called radiology to make the appointment for Jim's scans.

                    Very lovely gal helped me, as I told her the constraints: after 2 p.m, the first week of February, CT first, in case it's too painful to do the MRI, port nurse.

                    Wednesday Feb 5 at 2:00 p.m., Jim will have his scans at the hospital. Not at the office complex, but the hospital. CT first. MRI in the open MRI to help with his anxiety and claustrophobia.

                    This gives Jim a week to recover from the transfusion and be at home, eating and getting stronger, before the scans. His blood will need to recalibrate after the transfusion. It's plenty of time for Dr. S to receive and review the scan results.

                    CLEAN UP ON AISLE 9

                    We just completed a "sink bath" in the bathroom, which went smoothly. I washed Jim's hair, and we bathed his body, with towels surrounding him to keep him warm.

                    Jim shaved, but his beard is pretty Grizzly Adams, so he had to stop. He had pain, was tired, and needed a breathing treatment. This is progress, and I predict that after the transfusion, he'll be more inclined and able to bathe/shower again. And, I pray that he will have a better appetite.



                    It will be a long night and a very hectic morning. A long day at the hospital. But we'll have the recharged iPad, and we'll look at screens for the morning sun off the patio, a wine book, and a pedal exerciser to while away the time.

                    Jim plans to ask for "coffee and a slice of apple pie," as soon as he's settled. At home, he drinks decaf espresso, but at the hospital, he has real coffee. And he loves their apple pie, which I'm sure is loaded with sugar.

                    We will make the best of it, as we always do, and we'll probably engage our nurses and other patients (if we're in an infusion type situation) while we're there. We will wear our anti-flu super duper masks the entire time. Except when he's eating, I guess. Oh my. Well, we can't worry about that now. He needs blood.

                    Thank you, Donna, and all of our dear friends, for your love, prayers, and support. We love you and pray for you and your loved ones.

                    Love & Light,



                    Rose

                    "Film At Eleven" Explanation:

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                    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                    Comment


                      Hi Rose,
                      So Sorry Jim needs the transfusion. Good luck and my prayers. The thing that I got yelled at for was a schedule thing that they messed up but blamed me for. I removed myself from that situation and am looking at other options. Pray the new option works out please?? Would be much appreciated!
                      Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                      My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                      Comment


                        Thank you so much for the update, Rose. Thank you always for taking the time to tell us (all of us here who care so much about you and Jim) what is happening and why. When I read your thoughts and plans and worries (like about Jim taking off his mask to eat), I am reminded of Maslow's hierarchy of needs. Like you say, Jim needs blood (so he has to go to the hospital). He has to eat (so he has to take off his mask). He needs spiritual and physical consolations (apple pie!). All of these ways of meeting his needs come with risks. But needs must be met and the conclusion I've come to so easily every time I read your diary (in the form of your updates), is wow, you are doing your best and your best is AMAZING. Truly. Sometimes the stars align to make it a little easier and in that respect I am so glad that John's boss understands and that of course you have your beloved John and his family in the first place! Thank goodness. I will be thinking of you both and praying all goes well and especially that Jim feels like a new man after the transfusion. With so much love, Donna xoxo
                        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

                        Comment


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

                          funnylegs4 ~

                          Prayers going up that the new option will work out perfectly for you. You're a strong, determined woman, so hold your head high and persevere!

                          Donna ~

                          You are so kind to refer to my lengthy, babbling, rambling soap opera scripts as a "diary."

                          The stars have aligned for us many times, and yesterday was one of them. I worried that I had waited too long to schedule Jim's CT/MRI that we wouldn't get a time and date that would work. I was flabbergasted at how easy it was.

                          I also believe with my entire being that Jonathan and Michael intervene. Michael intervened many times with Jonathan's numerous hospitalizations, and I knew it was his angelic intervention, because I felt him present. When Jon had his colostomy surgery in 2004, only 14 months after Michael passed, we were devastated and terrified.

                          We ended up with the best surgeon in our county, who just happened to be on call that night, a wonderful intensivist, who was on call the evening I signed Michael's DNR, and incredible nurses.

                          As Jonathan was being rolled into surgery, and I called out "Mommy loves you!", I felt surrounded by a calming breeze, simultaneously warm and cool. An indescribable peace filled my soul. I knew it was Michael comforting and assuring me that Jonathan would be fine.

                          So, I know that they are watching and helping us from their perch above.

                          As they were today.

                          TRANSFUSION MORNING

                          At 3 a.m., I heard Jim screaming in pain. I ran downstairs, and he was out of breath, and his rib/tumor pain was excruciating. He had just awakened after sleeping on his left side. He couldn't remember if he'd taken a T/C earlier. He thought he charted it, but he didn't. He had taken some Codeine cough medicine, as his cough has been rough the past few days. So, I gave him a T/C, because it doesn't matter when he took the last one. He's in pain.

                          Then I gave him a breathing treatment. Rearranged his pillows, elevated his swollen ankles/feet, got him all cozy with his blankets and heating pad. He settled down quickly and went back to sleep. I did not.

                          I returned to bed, laid there wide awake after 3 1/2 hours of sleep, and prayed. At 5:30, I decided I needed some orange juice and decaf, so I started the day, while Jim slept peacefully.

                          After my shower, at 8:15, I woke Jim. He hadn't finished shaving after I went to bed last night, and he wasn't up to it this morning. So, bless his heart, he went half shaven today. I didn't have time to shave him.

                          He asked for a "cuppa," and when I went into the kitchen, we had an ant invasion. So I had to deal with that. Made his tea. Numbed his port. Put 2 T/C tablets in a baggie to take with us. Cut up an orange and put that in a baggie for snacking. Threw in his new fav, apple juice in a box. Gave Jim a breathing treatment. Hair, makeup, and dressed (that's for me, of course).

                          All dressed and hoping to be presentable to the world, Jim needed help with dressing. Bend down, pull his pants over his swollen ankles, then attempt to put his swollen feet into his sneakers. By the time John arrived, I was sweating.

                          Jim insisted on carrying the heavy bag out to the car, as I attempted to wrench it from his grasp. I had to run back into the house to get my flu mask. When I got out to the garage, John was helping Jim back into the garage. Jim was out of breath, gasping, groaning, and filled with anxiety.

                          Evidently, John brought his RAV 4, instead of his Honda, and it was too high for Jim to step up into the front seat. When he couldn't do it, an anxiety attack hit Jim.

                          Jim sat on one of his sturdy tool boxes, used his inhaler, and I soothed him, by gently caressing his back and telling him calmly, "It's okay. Just breathe and relax, honey. You'll be okay."

                          Jim asked me to call the hospital to cancel or at least tell them we'd be late. John spoke up, "I'm actually early, so we have plenty of time. I'm here, and I'm going to help you walk down the driveway and get in the car. And this afternoon, I'll bring the Honda. We have time, Jimmy, and you need this blood. We can do it."

                          By the way, John is the only one, who calls Jim, Jimmy. He has always called him Jimmy, as a term of endearment.

                          Jim stood up, hooked his arm in John's, and they walked to the car. John helped Jim to climb in, and Jim used the door frame to help himself. And we were off to the hospital.

                          AT THE HOSPITAL

                          We arrived earlier than the check in time, and John jumped out and told the valet that we needed a wheelchair. I pushed Jim into the lobby, and that chair was heavy. We went straight to the lobby desk, then a lovely older gentleman volunteer took over pushing Jim's wheelchair. "I've got this, young lady," he said to me charmingly.

                          "Well, thank you for helping me and calling me a "young lady!"

                          "I just call 'em as I see them," he said.

                          We waited with other patients to be admitted for outpatient treatment. We sat next to an elderly couple, with the husband as the patient, and the wife as the visitor. Same as us. We began chatting, and when they went in for their admission and came out, we all waved to each other and wished each other well. Lovely couple.

                          As always, Jim smiles and greets everyone in a waiting room. When people smile back, and wave back at you as you or they leave, it gives us all a feeling of being part of a larger group, who understand pain and illness.

                          We didn't have to go through admission, we were led to radiology by a woman volunteer. She offered to push Jim's chair, with his heavy black bag dangling from the handles, but I said I'd give it my best try. I should have said, "Oh thank you so much." But she wasn't a youngster either.

                          THE TRANSFUSION

                          The COU is much like the Infusion Center, with beds and comfy recliners, depending upon need, in cubicles surrounded by curtains. Jim chose a recliner. I had no choice, so I sat in a hard chair with a pillow behind my back.

                          Our nurses were wonderful, sweet, cheerful, and conversational. Jim had a blood draw for type and cross match, and the nurse was having difficulty with the drawback. I told her Nancy had the same problem last Saturday. She flushed twice, and it worked. So the nurse tried that. It didn't work. She told Jim to turn his head to the left. Didn't work. Then as I was about to say, "Cough, Jim," she said, "Give me a cough." It worked.

                          We were given a menu to order lunch. We had Asian stir fry vegetables and tofu, which came with rice, harvest veggies steamed, unsalted french fries, tomato bisque soup (Jim's fav), and of course, Jim had apple pie a la mode! We shared the lunch, and it was tasty. I laughed, "Finally, we get to go out to lunch together!"

                          We looked on Amazon for the room divider to block the morning sun in the living room, and Jim likes the one I chose, so that will be ours soon. We also looked at Amazon for wine guides, and Jim remembered the wine critic's name. So we'll pursue that further.

                          Dr. K ordered 40 mg Lasix when he came in and 20 mg Lasix when he left, because he was getting a lot of fluid at one time. When we got home, I called the COU to ask our nurse whether she gave him Potassium. Nope. I didn't think so. Jim had his Potassium immediately after my call.

                          We were done by 2:30! I was surprised, expecting to go until 4:00. But the COU closes at 3:30. They have that finely tuned.

                          We said hello and exchanged smiles and well wishes with the patients and their loved ones, who entered and left, while we were there.

                          Jim actually napped during part of our stay. The T/C kicked in.

                          We were close the side entrance of the hospital, which is situated between the chapel and the ER entrance for ambulances/paramedics. So, I rolled Jim out to the side entrance, and we breathed fresh air, while waiting for John to pick us up.

                          The hospital chapel is our church. I have prayed on my knees and lit hundreds of candles in that chapel. This chapel is where we held Michael's Celebration of Life. It is precious to me.

                          On the other side, the ambulance bay, we heard sirens and watched ambulances and fire trucks stream in as we waited for John.

                          Every time I hear a siren, or see a firetruck, or an ambulance, I think of Jonathan and Michael, and now Jim. I can't even begin to calculate how many times the fire department has been to our home, or how many times, I've been in an ambulance pulling into that bay.

                          It all flashed before me in a flurry of images, smells, sounds, emotions, heartbeats.

                          Then, John arrived, and he opened all of the doors on his Honda, walked up to us, asked if Jim was okay and what he was feeling, then pushed the wheelchair to the car, helped Jim in, helped me in, and drove us home.

                          THIS EVENING

                          No adverse side effects noted thus far. Jim had a huge BM, and he's peeing like a race horse. He is tired, naturally. Our nurses said that he might be feeling better as soon as tomorrow, and they were hoping he'd be feeling stronger on Friday, which is Jim's birthday.

                          They all asked him today, "What do you want for your birthday?"

                          Jim answered, "Another birthday."

                          John asked me today what he could give Jim for his birthday. I mentioned wine, "but it has to be French, from a certain part of France, have a certain bouquet. He's European, John. What can I tell you?!"

                          Just now I thought of this wonderful photo we have from years ago, with Jim and Jon on either side of Jonathan. It's a lovely, treasured photograph. Maybe he could enlarge it and frame it like he did for us with Jonathan's photo. I think Jim would love that.

                          Remember my former signature line, including "And Jim, the world's most wonderful Dad"? Well, he is and always will be.

                          That's the latest news, as Jim tries to sleep, while peeing like a race horse every 1/2 hour. A meal is in our future.

                          Thank you all so much for your love, prayers and continuing support, and reading my novellas.

                          We love you and pray for you and your loved ones. Abundant blessing to all ~

                          Love & Light,



                          Rose
                          Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                          Comment


                            Rose, if you ever have a spare moment, I'd be interested in knowing how you dealt with the ant invasion you mentioned.

                            I've had problems with ants here for 10 years now and understand that ants are just part of living in this particular area. Still, I've failed to appreciate their good qualities. What's the secret of getting along with them? Or, better yet, getting rid of them?
                            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                            Comment


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

                              agate ~

                              Our entire neighborhood has problems with ants. Many residents have exterminators spray around the outside of their homes periodically. We don't, because we don't want harmful chemicals in our yard.

                              They come into the house, when it rains, is cold, hot, or windy. We had such serious ant invasions for years that we actually ripped out our cabinets to find the source. If only we had known this very simple solution:

                              You will need:

                              Boric acid
                              Sugar
                              Water
                              A small vessel ~ we use empty votive cups, which are perfect. You could use a jar lid, or the cap to a bottle of dressing or something similar to the votive size, even a little larger is fine.

                              Pour a small amount of Boric Acid and sugar into the vessel. Add warm water, about 3/4 to the top of the vessel. Stir.

                              Set the vessel close to the area where the ants are entering, or even outside if you can find them there. Eventually, they will swarm to it for the sugar. The Boric Acid is toxic to ants. They take it back to their nests, and it kills them and other ants.

                              If they come in from various locations in your home, you can place the "traps" anywhere. When the traps dry up, you can throw them out or try to rejuvenate them with a little warm water.

                              Of all of the home repellents we've tried (cinnamon, vaseline among others), this is the only solution that worked and doesn't make a mess. It works!! We have had success with it consistently for many years. Cheap, easy, and non toxic.

                              Let me know how it works for you.

                              JIM'S UPDATE

                              Jim slept during the evening, but was up most of the night thereafter. The Lasix really did a number on him, and he kept peeing, which is good, of course, just exhausting.

                              He wasn't hungry, so we didn't have dinner.

                              I was just wiped out. I guess I nodded off in the office chair, trying to keep myself awake watching YouTube videos, while Jim slept. I woke up after about an hour and half and toddled off to bed. About 3 a.m., I woke up to Jim coughing and groaning. Then, I heard his nebulizer, so he was giving himself a breathing treatment. I stood on the landing and called to him. He assured me that he was fine, in no pain, just needed a breathing treatment and sent me back to bed.

                              Of course, I didn't go back to sleep, and my mind wandered all over the landscape of my life, the past, the future, the pain, the sadness, everything. I was also tied to the toilet, probably from the stir fry we shared. When Jim isn't eating, I'm not eating, usually. So, I am not getting proper nutrition either. Every so often, I have to remind myself that I have to eat something, even if he isn't hungry.

                              However, our food is in the kitchen, obviously, and that's just steps away from Jim's futon nest in our living room. If he's sleeping, I'll disturb him, if I'm in the kitchen making any kind of food. Hence, I don't eat, until he's awake.

                              Jim is feeling better already, so I'm hopeful that he will get his strength back so we can focus on getting some grub in his gut. His waist is still 41". And, the fluid is the primary reason why he gets full after a few bites and remains full for hours.

                              We saw a fairly young couple in the waiting area yesterday, and when they stood up, I saw her tummy was distended. At first I thought that she might be pregnant, but then I saw the scarf on her head, probably covering baldness. She was pale. Ascites, I thought. Then I prayed for them.

                              I told Jim today that I feel washed out, and he understood. It's the constant stress of the past 2 weeks with his hemoglobin saga. Scheduling, canceling, worrying. It was easier for us, because John and Nancy were back to help us. We both remarked today that it wasn't as bad as we feared. In fact, it wasn't bad at all. The nurses couldn't have been sweeter or more fun. Jim was comfortable. We ate together, literally, and he snoozed a little.

                              Nonetheless, today I cleaned both bathrooms and did 2 loads of laundry. I wasn't up to my usual mile, but I walked 3/4 mi this morning. It's trash night, so I've been gathering trash all day to put in the bins, so I can take them out later.

                              I still have to make dinner, clean up the kitchen, and get Jim settled for the evening.

                              But, the one thing I didn't have to do or worry about today was: phone calls and scheduling. That's a vacation day for me. That's a day on Cat Island with Donna for me.

                              Tomorrow should be a quiet day. It is Jim's birthday, so I'll bake him chocolate cupcakes.

                              Sunday, we'll watch the Pro Bowl. I hope we eat a lot. No appointments next week, unless Dr. K wants a blood draw on Friday, 1/31 before the scans. And that's Nancy at home with us, so that's a joy.

                              We send our love, prayers and healing thoughts to all of you and your loved ones. Thank you for walking beside us, and allowing us to walk beside you.

                              Love & Light,



                              Rose
                              Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                              Comment


                                Hi Rose,

                                I’m so sorry Jim was weak and had so much anxiety as he left the house but I’m so glad John was there when Jim needed him and that the transfusion appears successful. I’m so sorry the sirens gave you a PTSD moment.

                                Thanks so so much for your prayers, the new work option looks promising but I won’t have it confirmed for a week or 2. I will keep you posted. Unfortunately while sorting out this work thing I got a call from my friend telling me he’s in the hospital because he passed out. He’s diabetic but his blood sugar was not imbalanced during the episode so it could be something far worse. He’s staying overnight in the hospital to be tested(similar to me after I fainted but I woke up instantly so I was never hospitalized whereas he was unconscious for much longer) and I’m pretty freaked out!!! I hope it wasn’t a TIA stroke or something… He’s already been close to death at different times and each time I’m so scared his little body will give out. Please, please pray he recovers fully and is okay?!
                                Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                                My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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