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Thread: Jim's Journey

  1. #421
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Jim Is Eating!

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

    JIM IS EATING! JIM IS EATING!

    SHOUT IT FROM THE ROOF TOPS! JIM IS EATING!


    The first thing Jim said to me about dawn this morning, after we'd both slept soundly for 4 hours was, "I am hungry. I want oatmeal, applesauce, strawberry preserves, and blueberries."

    By the time we finished with changing his britches, rearranging him on the bed, tidying him up, taking meds, having a breathing treatment, Jim finally had his breakfast. He scarfed it back with no adverse response.

    He napped for about 3 hours, and when he woke up, he said, "I'd like 2 eggs over easy, and those southwest hash browns, crispy. Eggs on top of browns."

    More rearranging, britches changing, clean up, and then I brought his dentures and all of the fixing stuff, so he could chew properly. He put them in. Then, he ate both eggs and all but a tsp. of the potatoes.

    Within an hour, Jim asked me if we have any nuts. "I have my teeth in, so I can eat nuts. What do we have?" Cashews, walnuts, almonds. "Cashews."

    I filled a small bowl with cashews, salted, since Nancy said he needs salt. After he ate a few, I suggested that he take it easy. He hasn't had nuts in a long time, and they can be harder to digest.

    A couple of hours later, Jim woke up from his nap and asked for some coconut milk ice cream with diced peaches. As he was about to eat it, he felt a BM coming on. So, we got him up from bed, using the rollator and into the bathroom. He's now on the elevated seat, which makes it much easier for him to access and egress.

    He produced a formed BM, which is fantastic!

    He had a bit of challenge getting up from the toilet, using his rollator. But we rested, as this was a lot of exertion for Jim after being in bed so much. He did get up yesterday to be on the toilet while John and I changed the mattress and linens. But that's not much exercise.

    He's also very exhausted from pulling himself up in bed. I help as much as I can, and he uses the bed ladder, but it is still difficult for him.

    I forgot to mention that Jim drank about 3/4 of an Orgain shake yesterday. Maybe that was what he needed to get back on the right track with eating.

    As he struggles, I try to reassure him that he is doing well, and that we'll fatten him up again. We've been here before, and we got him back to a reasonable or safer weight. Once he has more meat on his bones, he will be stronger and more able to walk and reposition himself. This is our goal.

    Keep you eyes on the Prize.

    Yesterday, John left a bag with Body Armor and Imodium on our doorstep, and Nancy left a bag with avocados from her tree. How blessed are we?

    Meanwhile, I will continue feeding Jim whatever he desires to build him up and give him more strength.

    We love you all and pray for you and your loved ones. Thank you for walking beside us on our journey.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  3. #422
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    I can't get to my rooftop, but I am silently shouting "Jim is eating, Jim is eating". This is so great!
    Virginia

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  5. #423
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    ((((((Hugs to All)))))) ~

    Virginia ~

    Yes, it was great until today, when he was full with no appetite. I think he's filling up with fluid again. He's dehydrating again, because plain water gives him heartburn. It's tea, decaf espresso, apple juice.

    I ordered everything he wanted today from Instacart, and I had such a sweet and effective shopper. I got everything he asked for and more. I did get the organic quick oats, because standing over a pot of oatmeal stirring for 25 minutes is wearing me out. The quick oats were hard to find, but one of our stores had them.

    He wanted a cantelope, and she bought a giant one, which I cannot possibly cut. I don't have the strength in my hands. In lieu of apple juice, we got tropical tango juice (mango, orange, grape). And a fresh made, by the store (Sprouts) apple pie with no sugar added. I also found the organic potato leek soup, which I've not been able to find for a year or so. That's what Jim had for his first meal today, and it filled him up.

    His urine output is good, and we're not using the urinal or a condom, just his briefs. It's easier.

    He is now sitting up on the side of the bed, scooting himself toward the head of the bed and climbing in to lift himself up in the bed. It is much better than the way we were doing it, and it does get him upright for a few minutes. No trips to the toilet yet today.

    Jim wants to eat and knows that he needs to eat. But the fluid stands in his way. We're going to up his Lasix to add the 20 mg in the afternoon. We have to start now to try to get it out of him, if we can.

    Nancy will visit tomorrow to collect a UA, and at least flush Jim's port, if not draw blood. It has to be flushed monthly. She was going to call Dr. K this morning. I haven't heard from her yet. I'm sure she will tell us what we need to be doing to help Jim.

    That is us for now.

    I wish that I could write that Jim is eating more every day. That I'm cooking big tasty healthy meals for him. Oh how I wish I could.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  7. #424
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    Oh Rose, what a rollercoaster. I pray that the increased lasix will open up some space for Jim's appetite to return. No one could be more devoted and creative in finding solutions for nourishment and comfort than you!!!!

    Re the canteloupe (this works for squash too), when I get a big one, I use a long bread knife, position it in the middle of it and use a rolling pin or mallet if you have one to push the knife through. It doesn't take much strength at all because of the weight of the lever.

    Are you sleeping? Is Jim? I hope that you are able to get some rest! Is John nearby these days? I hope Dr. K has some good ideas and Nancy's port flush goes easily. We have a pain pump refill tomorrow at the pain clinic. I'm a bit nervous these days about going into the hospital with Nick because of the flu scares but we have to do it every 5 weeks. I watched the WHO press conference yesterday on the corona virus update. We live in a scary world right now.

    Sending you much love and prayers as always!
    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


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  9. #425
    Distinguished Community Member agate's Avatar
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    Canteloupe would be a challenge in the same way as an acorn squash is. Every time I'm facing down an acorn squash, I allow plenty of time and choose my sharpest knife. Sometimes I try several knives. Beforehand I make a pencil mark all around the squash so I'll know where to cut, and then I keep cutting along that line, a little bit at a time. This process often takes half an hour but it works. Pressing on the knife with a mallet to help the knife along sounds like a great idea.

    A small hammer might work well.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  11. #426
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    ((((((Hugs to All)))))) ~

    Thank you agate and Donna.

    Nancy visited today and the flush went well. Before she left, Jim asked me to ask Nancy to cut the canteloupe. She did. I gave Jim a slice. It was too hard, not ripe enough. I cannot win. How do I ripen a cut canteloupe?

    Donna ~ I know how scared you are about going to a medical facility right now. Wear Masks!!! Everywhere! I'm serious. We don't go anywhere without a mask on, and everyone, like Nancy or John, dons a mask when they enter our home. I'm also putting protective gowns on them.

    I was wearing my mask, when the Instacart shopper arrived yesterday, and I told her that my husband is ill, and I have to be careful about picking up anything. She totally understood and said that she sees many people wearing masks now.

    The Coronavirus is spreading indiscriminately now. In Italy, Iran, South Korea, and some cases in the U.S. A majority of our neighbors are South Koreans. They are wearing masks on their walks, and I will be too, should I ever get out to walk.

    A California judge blocked a federal relocation of C-virus victims to an abandoned former institution for people with developmental disabilities in our county. We can't just bring this plague into our community without proper preparation and facilities. This is an abandoned, dilapidated institution. What if they have to go to ICU by ambulance?

    Do I think about this constantly with regard to Jim? Oh yeah. Times a gazillion.

    If we get the C-virus, the flu, or any kind of infection, it will be Adios Amigos for us. I know it would be for Jim, and I'm assuming that my immune system is shot, so it would be for me. I'm thinking we need to get a will fast.

    JIM'S UPDATE

    Not eating as well as he was, had peaches today and a cup of potato leek soup so far. He's not drinking enough water, still complaining about its taste and how none of the water is safe. So, of course, he is dehydrated. I've tried adding juice to his water. Not getting anywhere. It's tea or nothing.

    The apple pie sits on the counter waiting. All of the groceries I bought yesterday are waiting.

    Vitals: Temp: 98.7 BP: 100/65 HR: 90 Waist: 41"

    Nancy said Jim's heart and lungs sound fine. She had the "water talk" with Jim. I'm tired of being the nag, so she's my reinforcement. This way, I can say, "Nancy said ..."

    When she was cutting up the canteloupe, she said, "Whatever he craves, give it to him."

    "I am. But I bring in his tea, and he falls asleep. i warm it up. He falls asleep. And so on. He wants pie. I get him pie. Oops! Turns out this time he wanted a blueberry pie! Doesn't matter, because he's not up to eating pie."

    I should open the cupboards and fridge and freezer for her to see all of the food choices we have. I stock up on everything. And it just waits.

    Donna and Nick ~ praying that all goes well tomorrow with the refill and that all germs will avoid you. Wear Masks! Wash your hands or wear gloves and change them frequently. As soon as you get home, take off your clothes and put them in the laundry. Take a shower, wash your hair. Carry packets of alcohol swabs with you everywhere to clean your hands or anything you touch. I wipe down everything we have delivered with alcohol. It's been handled by many people from everywhere.

    We love you all, and we pray for you and your loved ones every day. Thank you for your love, prayers, and constant support.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  13. #427
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Thank you agate and Donna.

    Nancy visited today and the flush went well. Before she left, Jim asked me to ask Nancy to cut the canteloupe. She did. I gave Jim a slice. It was too hard, not ripe enough. I cannot win. How do I ripen a cut canteloupe?

    Donna ~ I know how scared you are about going to a medical facility right now. Wear Masks!!! Everywhere! I'm serious. We don't go anywhere without a mask on, and everyone, like Nancy or John, dons a mask when they enter our home. I'm also putting protective gowns on them.

    I was wearing my mask, when the Instacart shopper arrived yesterday, and I told her that my husband is ill, and I have to be careful about picking up anything. She totally understood and said that she sees many people wearing masks now.

    The Coronavirus is spreading indiscriminately now. In Italy, Iran, South Korea, and some cases in the U.S. A majority of our neighbors are South Koreans. They are wearing masks on their walks, and I will be too, should I ever get out to walk.

    A California judge blocked a federal relocation of C-virus victims to an abandoned former institution for people with developmental disabilities in our county. We can't just bring this plague into our community without proper preparation and facilities. This is an abandoned, dilapidated institution. What if they have to go to ICU by ambulance?

    Do I think about this constantly with regard to Jim? Oh yeah. Times a gazillion.

    If we get the C-virus, the flu, or any kind of infection, it will be Adios Amigos for us. I know it would be for Jim, and I'm assuming that my immune system is shot, so it would be for me. I'm thinking we need to get a will fast.

    JIM'S UPDATE

    Not eating as well as he was, had peaches today and a cup of potato leek soup so far. He's not drinking enough water, still complaining about its taste and how none of the water is safe. So, of course, he is dehydrated. I've tried adding juice to his water. Not getting anywhere. It's tea or nothing.

    The apple pie sits on the counter waiting. All of the groceries I bought yesterday are waiting.

    Vitals: Temp: 98.7 BP: 100/65 HR: 90 Waist: 41"

    Nancy said Jim's heart and lungs sound fine. She had the "water talk" with Jim. I'm tired of being the nag, so she's my reinforcement. This way, I can say, "Nancy said ..."

    When she was cutting up the canteloupe, she said, "Whatever he craves, give it to him."

    "I am. But I bring in his tea, and he falls asleep. i warm it up. He falls asleep. And so on. He wants pie. I get him pie. Oops! Turns out this time he wanted a blueberry pie! Doesn't matter, because he's not up to eating pie."

    I should open the cupboards and fridge and freezer for her to see all of the food choices we have. I stock up on everything. And it just waits.

    Donna and Nick ~ praying that all goes well tomorrow with the refill and that all germs will avoid you. Wear Masks! Wash your hands or wear gloves and change them frequently. As soon as you get home, take off your clothes and put them in the laundry. Take a shower, wash your hair. Carry packets of alcohol swabs with you everywhere to clean your hands or anything you touch. I wipe down everything we have delivered with alcohol. It's been handled by many people from everywhere.

    We love you all, and we pray for you and your loved ones every day. Thank you for your love, prayers, and constant support.

    Love & Light,



    Rose
    The corona Virus spreading made me worry for you and Jim so much too. I would have to basically stay home all the time if it hits here.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  15. #428
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    Hi my Rose, Thank you for all your guidance for the hospital visit - will do! Or I'll try anyway, Nick has a lot of trouble tolerating anything on his face which is why we could never use a CPAP for his apnea. I will let you know how it goes. I found this website on how to write your own will (without a lawyer!) in California. https://www.askmyattorney.net/blog/2...in-california/. I think it would be a good idea to do so - that would put your minds at rest. Off to get my haircut, get a stockpile of our meds in case of pandemic here and do the pain pump refill. We are leaving for SC on Friday - Fripp Island for the month of March. Looking forward! 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. #429
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    Thumbs up Jim Is Eating Again!

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

    Jeanie ~

    Thank you for worrying about us, as we worry about you too.

    Jim and I have periodically watched news coverage of the C-virus today. It seems that the fatality rate is downplayed. The symptoms are flu-like, and has the same high risk demographics susceptible to serious or fatal outcomes: disabled, elderly, immune compromised. Ding! Ding! Ding!

    If you don't have masks or gloves, I recommend that you order some from Amazon. They are probably in high demand now.

    If you don't have to go out, stay home. Order from Instacart, and wear a mask when the delivery person arrives (I do). I also wipe down everything with alcohol, which I know sounds very germaphobic, but I've had to be careful for Jonathan's and then Jim's sakes. And mine, since I'm the caregiver.

    These are precautions I have taken for many years, especially hand washing.

    It's not just these strange viruses that keep coming from China that we have to worry about either. There are many Super Bugs now resistant to antibiotics.

    If the C-virus isn't gone by March 23, we'll reschedule Jim's appointment with Dr. K. We're not venturing out for just a periodic "howdy do" with Dr. K.

    Apparently, Rush Limbaugh said that the C-virus is nothing more than a simple cold. Unfortunately, Rush has Stage IV lung cancer. There is nothing simple about a cold, when you have Stage IV lung cancer. He is vulnerable and needs to take precautions from any kind of infectious disease.

    Donna ~

    How did everything go for Nick today? I've been thinking of and praying for you both. I hope it all went smoothly.

    Thank you for the link to the "do it yourself" will. I haven't checked it yet, but I appreciate, as always, your diligent tracking down of information to help us.

    I can't believe that you are getting on a plane during this C-virus scare! Planes (and Uber/Lyft vehicles) are the germiest places. Are you and Jim going to wear the space suits that medical personnel are wearing to tend to C-virus patients?

    I know that you are seasoned travelers. I was too in my youth. But I can't imagine getting on a plane now or ever. The fear and stress would do me in. I can't even stand the thought of driving on freeways any longer. That stems from isolation and years of protecting my loved ones from infections.

    Our prayers will be with you for safe and germ-free travel and a wonderful vacation.

    OUR UPDATE

    Jim and I had a restless night, neither one of us being able to sleep for more than an hour. No crises. Just not sleeping. Jim made up for it in the morning.

    I got up at dawn, literally. I'm having an RA flare from stress and overexertion. I pulled a groin muscle yesterday running downstairs, when Jim was calling for me. The urgent need? A cup of tea. I've had pain in my fingers too. My back, always, nothing new there. So, I've been applying Aspercreme, Witch Hazel, and heat.

    I skipped my walk this morning due to my uncertainty to be able to walk without pain or falling. And Jim was sleeping.

    At 9 a.m., I drove to the drive thru pharmacy for Jim's nebulizer and inhaler treatment meds. I also filled the van tank half full. I don't drive far or often. Just enough to keep the engine and battery in good working order.

    When I returned home, Jim was asleep. When he woke up, he asked for 2 over easy eggs, some southwest hash browns and a fried tomato. Done. He ate all but a small portion of potatoes.

    Then, Jim wanted a tub of applesauce.

    Then he wanted cookies, and I reminded him that he has apple pie. Apple pie it was with cashew milk ice cream on the side. He enjoyed the pie, but he didn't eat all of the crust.

    Next request: decaf espresso with sliced apples. I brought him a fruit salad with fresh organic apple slices, and frozen organic mango and pineapple chunks.

    We made one trip to the toilet, using the rollator, and he attempted a BM. No BM. But that's fine, because he's getting out of bed and ambulating. Actually, he sat on the side of the bed to eat his eggs, potatoes and tomato.

    Jim is using his bed ladder more now, and he said today, "I think my arms are getting a bit stronger."

    "That's called 'nutrition' honey."

    His urine output is excellent, and his vitals are all very good.

    Other than gut distress, Jim has no pain. He hasn't taken a T/C for quite some time. So long, I can't remember.

    So, we rejoice in his appetite, his determination, his increased strength, and we pray for more weight gain and strength.

    My goal tomorrow is to cut Jim's hair, bathe and shave him, and change his linens. Nothing else is on our agenda.

    Thank you all for your love, prayers, continuing support and friendship. We love you and pray for you and your loved ones always.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  19. #430
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    Hi Rose,
    I am so glad that Jim felt better enough to eat a good meal!!! That is wonderful news. Don't worry, we are not flying! We are driving down to SC with Daisy. I have alcohol wipes for everything in hotels, but I'm not worried as I'll just take the usual flu precautions. Yesterday the pump refill went fine even though it took the doctor a little while to locate the port (it's an implanted port and sometimes the rubber port can be tricky to locate). She withdrew the med inside the pump and then injected the new dose. He's good to go for another 5 weeks. We gave the doctor a thank you card because she's leaving the pain clinic to do OR anaesthesia. It's too bad she's going - she's fantastic. Jim and I have an appt with her replacement when we get back. We have a routine now with no changes necessary in the dosing so I'm sure it will all go fine. I asked the doctor about plans for protocols for a possible pandemic (what about access to Nick's pump meds? what about coming into hospital for refills?). She looked at me like I was from outer space. Not worried at all - said it would be business as usual and that MANY more people died of flu than CoronaVirus. OK, but I refilled our prescriptions for me and Jim anyway and I'll get extra food in the house when we get back at the end of the month. We live in the country and we don't have to commute on public transpo to work, so we feel safe, but better safe than sorry, right?

    Sending much love and hoping each day is a good day at the Hacienda. Lots of 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


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