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Thread: Jim's Journey

  1. #401
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up A New Day, A New Jim!

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

    funnylegs4 ~

    I am praying for your friend and for you, and all of those, who you love. What a frightening ordeal your friend has endured. God Bless You Both.


    WHAT A DIFFERENCE A DAY MAKES!


    I must tell you that Jim is a new man today! Four doses of Amoxicillin worked like a wonder drug, I guess.

    Jimís urine output has increased significantly, and heís more able to drink the amount of water he needs. For breakfast, he ate 2 over easy eggs, fried left over mashed potatoes, and 4 T of baked beans! He ate with gusto! He finished it all. For snacks, heís had a tub of applesauce, two slices of cheddar cheese and Branston pickle.

    That is probably more than heís consumed all totaled in a week! He said, ďI apologize, honey, for making you run back and forth to get me food and tea, but I have an appetite, and itís wonderful!Ē

    Yes, it certainly is!!!

    He helped me assemble his rollator this morning. An easy task, but he was up to doing it, which he hasnít been for awhile.

    He also announced that tomorrow he wants to take a shower. He hasnít had a shower in months. He hasnít even felt up to having a bed bath for 2 weeks. His beard rivals Grizzly Adams, and his fingernails Ö well, Iíve been calling him Howard Hughes! Iíve been wanting to cut his hair for months too, and he thinks heíll be up to doing that as well. So, he wants to clean up and be groomed properly.

    I am just amazed and so grateful for this turn around.

    I suppose that it is possible that heís been brewing this UTI for awhile, which would explain his decline. I donít know why we didnít do a UA before this, but I guess it was because Jimís urine output was adequate, and the color was fine. Henceforth, heís going to have a UA every month, when Nancy draws his blood for labs.

    This was part of the mystery, in fact, since his last labs were improved. His WBC is the highest it has been in 2 years, as well as his platelets. Kidneys and liver function are normal. And his vitals are good. So, I couldnít understand why he was failing.

    This afternoon, John texted me that he left us an early Valentineís Day present on our front porch. A small potted flowering plant and a sugar-free apple pie.

    I ordered a Marie Callenderís pie crust today and apples with the intent of making one for Jim. The Instacart shopper brought me 2 apples, when I ordered a bag. I canít make pie with 2 apples!

    Now, I donít have to, because our dear, sweet John brought us one. He knew it had to be sugar free, as we have to keep an eye on Jimís glucose.

    Boy, did Jimís face light up, when I brought the pie in to him! He even got a little misty-eyed, and said, ďJohn is so wonderful. He is the best of the best. Bless him.Ē Then, Jim called John to thank him.

    Tomorrow, John, his wife and daughter leave for a 4 day volleyball tournament in Las Vegas. I think heíll feel better now about leaving us, knowing that Jim is making a comeback.

    Once Jim starts eating properly again, heíll get more strength, and hopefully heíll be able to have his scans and his gut drained.

    Jim has a strong will, like our boys, and he said, ďI felt terrible, but I wasnít giving up yet. I trusted you and Nancy to figure out what was wrong with me. And you did.Ē Last Wednesday, I called Nancy and Dr. K and requested a UA. I just felt sure that was the problem.

    Fifty years of caregiving. I guess I learned a few things along the way.

    What a difference a day makes! (And Amoxcillin)

    Thank you for loving us, praying for us, and supporting us, dear friends. We love you, and you are always in our prayers. We send you positive, healing energy and hope. We have an abundance of it right now to share with you.

    God Bless You!

    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. #402
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    Unhappy On the Roller Coaster

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

    Unfortunately, Jim's improvement didn't last. During the night, every time he woke up, he began hiccuping. He had indigestion. Tums didn't help. He slept for an hour or two, woke up hiccuping, then panicking for lack of air, so we did his breathing exercises. And I gave him a breathing treatment or two.

    Full of gas, for various reasons. 1. He sleeps with his mouth wide open, always has. 2. He's been using straws for his tea, juice, water. 3. He hasn't worn his dentures for weeks, so he doesn't chew properly when he eats, and he ate a lot yesterday (for him). 4. He slides down in bed on the slippery mattress cover (as did Jon), so he isn't upright enough. Even with the "bed ladder," he has difficulty pulling himself up into bed.

    At 6 a.m., he vomited. Very little food, mostly water. So very similar to Jonathan's episodes, when his belly blew up with gas.

    Throughout the morning, Jim tried to nap, but he woke up with hiccups. Finally, he decided to move into Jon's recliner, so he could be upright. I brought out everything he needed from Jon's room ~ nebulizer, heating pad, over the bed tray, etc. I helped him walk with his rollator to/from the bathroom, where he produced several normal bowel movements. He is also peeing well, and the urine is clear. That is a plus, of course.

    He awoke from his nap with hiccups, then it was off to the bathroom, and back into bed in Jon's room. I brought everything back from the living room and set him up. He took his Amoxicillin at 1:00 p.m. and slept until 3:30. He woke up without hiccups!

    I can't do anything about his open mouth sleeping. He probably should have a C Pap, but he doesn't want one. He has lifelong sinus issues too.

    But, there will be no more straws, and he will drink his water from a glass, not the bottle. He is also going to wear his dentures, if I have to put them in for him! We have to try to eliminate anything that can increase air into his body.

    He hasn't eaten today, because he's leery of vomiting again. So, I'm going to try to encourage him to take a few sips of an Orgain shake. Or perhaps some soup.

    Naturally, we're both disappointed in this setback, and we're praying that tomorrow, he will return to the happy state he was in yesterday.

    This journey is a roller coaster. As we used to say in the old days of Disneyland, "It's an E ticket ride."

    We thank you all so very much for your love, prayers, and enduring friendship. We love you and pray for you and your loved ones every day.

    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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  5. #403
    Distinguished Community Member agate's Avatar
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    What a shame he took a downhill turn, Rose.

    I'm sure you've tried everything and heard about every possible cure for something like hiccups but in case you haven't heard this one....

    I've been using this cure for hiccups since I read about it as a kid. Take a glass of water and stretch a handkerchief over the top of it, then sip the water through the handkerchief. Just a couple of sips usually does the trick for me. I use a plain white handkerchief but I don't know that the type matters.

    If that doesn't work (but it has 99% of the time) I try the other cure I know of: Take a deep breath and hold it for as long as you can, then let it out and quickly take another deep breath, and repeat the procedure. Do this several times, slowly and deliberately. It's hard to get the next inhale without hiccuping but it can be done, and soon you find that the hiccups are gone.
    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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  7. #404
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    Thank you so much for your prayers Rose! He's doing okay but I'm still paranoid about his health. So sorry for the set back with Jim. Perhaps something about Jon's bed is causing gas. Can Jim sit in other locations at times like a chair to be more upright and move around with the walker to release the gas by movement?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  9. #405
    Distinguished Community Member Jeanie Z's Avatar
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    Smile

    Happy Valentine's Day to both of you. Thank you for the ecard. I hope you both had a better day today and will have a good weekend. Love, Jeanie :)

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  11. #406
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    Thumbs up

    ((((((Valentine's Day Hugs to All)))))) ~

    agate ~

    Thank you for your suggestions. I have heard of both techniques, however, I haven't tried the handkerchief over the glass of water.

    Here's what we do: immediately after a hiccup, breathe in, take 10 small sips of water without breathing, then breathe. It usually works. The option we used with Jonathan and Michael was a 1/2 tsp of sugar on the back of the tongue, which also usually worked.

    My main concern was preventing hiccups. Without straws and with drinking water from a glass instead of the bottle, we seem to have conquered the cause of excess gas. Jim stopped hiccuping yesterday afternoon. I'm still working on getting him to put in his dentures.

    funnylegs4 ~

    The only thing about the bed is that sitting upright in it can cause pressure on Jim's distended gut. If Jim is too reclined, with his head flatter than elevated, he tends to sleep with his mouth open more.

    Jim did sit in Jon's recliner, but he still woke up hiccuping. He does move to go from bed to bathroom, several times day and night. He isn't immobile.

    I completely understand your concerns and fears about your friend. I send you both healing, strengthening prayers.

    TODAY'S STATUS

    Jim took his Lasix in the evening, so we were up all night going to/from the bathroom. I went to bed about 2 a.m. At 4, he paged me. He had missed his urinal peed a little on the floor. After cleaning up, I went back to bed, but I didn't sleep. I checked Jim at 5:30, and he was asleep, so I went back to bed again, and I didn't sleep.

    Mid-morning, Jim announced that he wanted to have a bowl of oatmeal, with applesauce and a dollop of strawberry preserves on top. He ate it all. He also said he wanted to try the apple pie from John. He waited awhile after the oatmeal, took a couple of bites and said he was too full to enjoy it.

    I think that he has acid reflux now, so we'll have to ask Dr. K and Nancy how we can address that.

    I'd really love to get Jim stronger, so that he could tolerate having his gut drained. Of course, we know that it won't last, but it might bring him temporary relief.

    His urine is a beautiful color, so we know Amoxicillin is working. That can only be helpful to Jim.

    Grooming and Hygiene

    Jim wanted to shave today! Yay! First, I had to recharge his electric razor. Then, clean it out. Then Jim started shaving his neck and chin, and there's just too much there. He took a rest. I have offered to shave him with his straight razor many times, but he declines. Apparently, I don't do it correctly. Jonathan and Michael never complained about the way I shaved them. Perhaps that is because they had never shaved themselves and didn't know the difference.

    One way or the other, we have to remove Jim's scraggy beard. He doesn't wear it well. I want to cut his hair, bathe him, keep him fresh. I may just mention to him that his appearance reflects poorly on me as a caregiver. As in ... I'm not doing my job. We could call in all of the aides in the agency, and I guarantee you that if Jim isn't up to a shower, bath, haircut, or shave, it won't happen.

    Gardening Is Good For The Soul

    In between watching Senior Golf and Bowling with Jim (yawn ... yes, that's exactly what I did the entire time), I got up to do housecleaning and gardening. Yes, gardening!

    I cleaned out Michael's pond and refilled it. Cleaned out leaves and debris surrounding it. Then I cleaned out Jonathan's memorial garden, which is just temporary, until I can have everything in it removed and replanted. I made sure that all of the solar angels and white roses were sturdy and upright. They give such a lovely glow at night. I pulled weeds, and I watered what is left of our plants in the backyard.

    Jim watched me from Jon's picture window. When I came in to check on him, he said, "You're back must be hurting, honey. Please sit down and rest."

    "I needed to do it," I replied.

    "I know you did. I know."

    I also gathered the indoor plants, albeit few, and watered them. I finally decided to find nicer pots for them than the plastic ones they came in. So, I gathered some from the backyard, cleaned them thoroughly and placed the plants in them and on our dining room table.

    So many of our plants in and out have been lost due to my neglect. It is depressing to me to see them wilting, when all they need is for me to take a few minutes to water them. We have jade plants everywhere in our front and backyards, because that is the one plant I knew would survive my neglect. With the rain we've had, they are all blooming now, and they look so pretty. Some of them are 40 years old.

    Although I am aching from the stooping, bending, pulling, standing, I feel better spiritually and emotionally for working with the plants and Jon's and Michael's gardens today. As I told Jim, I needed to do this. I'll probably have a sunburn, because I forgot to put on a hat. It was an impulsive thing, as I sat in Jon's room watching golf and bowling and looking out at the backyard.

    The poster above Jonathan's bed is a photograph of Native Americans on a hill overlooking their land. The poster reads: "Earthly Reverence: Every Living Thing Is Our Relation". Jonathan often pointed to the poster, and as we read it to him, he repeated every word.

    TOMORROW?

    Who knows what awaits? Today, we made progress. Today was a better day than yesterday, so we have hope for tomorrow.

    We love you and pray for you and your loved ones, and we thank you for your love, prayers, and continuing 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. #407
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    Dear Rose,
    What a roller coaster! I'm so glad that Jim (and you) have had some good and happy moments - but it's such a worry that things can change so quickly. I know how important it is for you to have Michael's memorial fountain in good working order - this is part of your mothering and for Jon, your grieving, don't you think?

    I am concerned that you are getting so little sleep. I wish you had a chance for a bit more uninterrupted rest my dear.

    My sister and her husband have been here for a week and are leaving tomorrow. They helped a lot at the Children's Home play that I directed - here is my brother in law frank at the piano (he was the music director). Frank Mission Home.jpg The children were so excited and completely adorable.

    Sending you much, much love, Rose. I hope that you have a good and happy week coming up. 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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  15. #408
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    Default Saturday's Update

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

    This is yesterday's (Saturday) update, which I forgot to post. I will post today's update later. Jim didn't have a good night, after this pleasant day.

    jeanie ~

    I'm so sorry! I missed your post yesterday in my reply. Thank you so much for your Valentine wishes and for your continuing love and prayers for us. You and your dear family and friends are in our prayers too. Please take good care of yourself.

    SATURDAY

    Although we are Open 24 Hours here, it's still a challenge to get Amoxicillin timed every 8 hours. Sleeping through his med times happens. We're doing our best to keep up with it, but we may be behind by a couple of doses at this point.

    Last night, Jim ate half a bowl of vegetable soup and a slice of apple pie (minus some of the crust). No indigestion or excess gas, since we discontinued straws and bottles.

    This morning, Jim ate his oatmeal, applesauce, strawberry preserve breakfast. Later he requested his decaf espresso. This time I made it perfectly, and he was so pleased! He really enjoys coffee. He asked for a piece of pie, but he fell asleep before he could eat it.

    We may have solved one of the problems with the bed today. We determined that the mattress isn't properly aligned with the bed frame. Also, the upper left bed rail was impeding air circulation.

    My solution for now was for Jim to sit on the chair bed, while I deflated the mattress, then lowered the bed rail, then reinflated the mattress. It worked, and Jim was able to climb into bed more easily, as well as get full benefit of the alternating pressure.

    Where Jim was crooked in the bed, and his left leg kept falling out of the bed, he is now in the center. There are bumpers on both sides of the mattress, but the left side wasn't working properly, because the rail was obstructing the flow.

    Next week, I'll ask John to drop by to reposition the mattress on the frame. After all, John helped Jim put this mattress on Jon's bed the day before Thanksgiving 2018, so John knows how to do it and can help me.

    Thank you all for your love, prayers, support, positive, healing energy. We return all of this to you and your loved ones ten-fold with gratitude.

    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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  17. #409
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    Default Sunday Update

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

    Donna ~

    What a beautiful photo of your brother in law and the sweet children. You are all such a blessing to Cat Island, and I know you feel they are all blessings to you.

    Yes, tending to Michael's and Jonathan's gardens is part of my grieving. I want to take care of their spaces, as I cared for them. Unfortunately, I don't always have the time or energy to do it. So, it felt very comforting to work on their gardens.

    SUNDAY

    I went to bed about 1 a.m., and at 2:00, Jim paged me. He had vomited into the basin by his bed. A small amount with traces of oatmeal, but primarily fluid (water). I gave him a breathing treatment, and he went to the bathroom, then settled down and slept for about 2 hours.

    At 6:00 a.m., after he woke up, he coughed, gagged and vomited again, a very small amount, mostly sputum.

    I measured his belly, and it is now 44". As with Jon, the pressure of his distended belly is pressing on his lungs and causing him to vomit fluid.

    Another breathing treatment, and he slept again for about 2 hours. No more vomiting, thankfully, but he felt awful. His temp was 100, so we stripped him down to all but his sheet. Temp was normal within an hour. His SATS were 87, so I put him on O2 at 2.5 liters. Again, the pressure of his belly is pressing on his lungs. SATS came up to 93, heart rate finally slowed down from the 100s to 90.

    He's been sleeping now for about 3 hours. He's more comfortable in the bed now that it is circulating properly.

    We debated going to the ER, but what he really needs is gut drainage. He doesn't want to go to the ER and find out they can't do the drainage. We also want to avoid the ER, unless it's absolutely necessary. Jim is so vulnerable to picking up any kind of bug. And so am I, for that matter. I had an hour of sleep last night.

    So, I have an email to send to Dr. K asking him to call the hospital and ask if Jim can come in any time tomorrow for paracentesis. I'm praying that he can be squeezed into the schedule. I will also call first thing in the morning with our request.

    We will use the excellent ambulance service we used last April.

    When Jim wakes up, I will give him 20 mg of Lasix (the extra dose, which he hasn't been taking, because he pees so much on just 40 mg). I dug out the condom catheters (we have a huge bag full of them) and drainage bag from Jon's closet, which gave me a moment to try to organize it a bit. So that Jim doesn't have to get up to use the urinal or go to the toilet, he will have the condom cath through the night.

    After the drainage, we're going to do the 40/20 Lasix every day and condom cath at night. I hope that will keep the fluids down for longer than it did last time.

    I pray that the drainage will help Jim feel less full and more able to eat.

    The drainage was on our To Do list, along with Jim's scans. But, a UTI came along, and all of that was set aside.

    Please pray with us that Jim will have a better night, that the hospital will be able to treat Jim tomorrow without going to the ER, and that he and I get some sleep tonight. Of course, he's already slept for about 7 hours today, which he needed desperately. Thank you so very much, dear friends.

    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. #410
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    Default Gut Drainage Tomorrow

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

    Jim had a better night using the condom catheter. He slept for a few hours, after several naps yesterday.

    I slept on the futon nest in the living room, so that I would be closer to him. I got tired of running down the stairs constantly, as I did Saturday night. It worked out well, as I was utterly exhausted, and fortunately Jim didnít need my help for 5 hours. So, I slept.

    Dr. K wasnít in today, so his colleague on call called me about scheduling the paracentesis. A very nice doctor, who was supposed to be our first choice for the second opinion. Weíre happy with Dr. K, of course.

    After asking me a few questions, he said that heíd ordered the paracentesis and that the hospital would call me to schedule it for today, if possible, otherwise for tomorrow.

    About noon, the hospital called and said that the best they could do was 11:45 tomorrow morning. Jim has to have a blood draw first, a CBC and a blood clotting test. So, we have to go to the lab first, then for the gut draining. Jim may end up in a hospital wheelchair, because the ambulance EMTs can't wait around for him and take him on the gurney to various locations in the hospital.

    I hope that theyíll make an exception again and allow me to stay with Jim during the procedure. I donít know why that isnít permitted. Perhaps because the room is tiny, and one more person is a crowd should an emergency occur.

    Jim ate a small amount of oatmeal and applesauce today. Iím praying that the paracentesis will result in him being able to eat more, before feeling full. Relieving the pressure on his lungs and heart should reduce coughing, vomiting, SATS dropping, heart racing. It will also probably cause the indigestion/heartburn to disappear. This is what we hope and pray will happen.

    We managed to get most of Jimís beard shaved off today, but more work needs to be done. Weíll tackle the rest of it with the electric razor.

    Iím planning to weigh Jim and measure his belly before and after the procedure. It might give us a better indication of his actual weight, which I am certain is well below what it should be. He is definitely malnourished.

    I think we should also discuss having paracentesis every month, so that he can maintain a reasonable, healthy diet.

    For now, that is us.

    Thank you all for your prayers, love, and constant support. We know youíll be with us tomorrow. We will don our flu repellent masks and wear them diligently, and Iíll wipe everything in my sight with alcohol wipes.

    We love you and pray for you and your loved ones.

    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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