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Thread: Jim Has A Fever. ER Bound

  1. #121
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    The four of you are remarkable - Jim, Rose, Michael and Johnathan - still working as a team. Goldstar for Jim and Rose!
    Virginia

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

    Are you ready for some fantastic news? Not just good. Fantastic.

    Jim is off of O2!

    When I came down this morning to start our day, I noticed that his cannula was off, completely off, somewhere in his sheets/blanket. Immediately, I took his SATS. 93 and his heart rate was 68, so he wasn’t struggling to get to 93.

    I challenged Jim, “Honey, do you want to try going without O2 for awhile? We’ll keep an eye on your SATS and heart rate. If you feel you need O2, it’s right there. Let’s have a breathing treatment first, and then see how it goes.”

    “I’m game,” he replied, “Let’s try it.”

    I set up his breathing treatment, then took my walk. When I came home, I made his big bowl of “delicious” cereal ~ Cascadian Farm Honey Crunch Oat, with raisins, diced peaches in peach juice, sliced almonds, banana, and coconut milk. He loves it.

    Then he took a nap for 1 1/2 hours, because he’s up a lot during the night going to the bathroom.

    But Wait … There’s More …

    When he woke up, he said, “I’m ready to take a shower. First a cup of tea. Then a shower.”

    And he did. It felt wonderful, after over 2 months of not having a shower. Of course, I was there, every second, and he sat on the top of the toilet, while I dried him from head to toe.

    He was huffing a bit, so I brought his inhaler, and that calmed him.

    Then, he sat in front of the bathroom sink, with a small mirror, which we borrowed from the living room, at his eye level, and he shaved.

    Still off of O2.

    While Jim shaved, I remade his bed, as the alternating pressure mattress overlay slides around a lot.

    Back to his futon nest, SATS, after all of that, were 92, and heart rate was 74.

    Resting on the futon, Jim was fine. No tightness in his chest, no effort in breathing.

    NANCY’S VISIT

    Last night, Nancy left a message that she was visiting today to do a UA. I texted her back later that Jim didn’t need a UA, because his urine is crystal clear, abundant, no odor, perfect. So we cancelled her visit.

    She had forgotten that Jim also need to be recertified by the agency (every 60 days), and it was due. So she called today to schedule the visit just to sign the recert form.

    Jim and I had lunch while waiting for Nancy. I suggested that we not tell her about him being off of O2, and see whether she notices it on her own.

    Nancy is always so cheerful and sweet, and she was just so happy to see us. Some of you may remember when I posted about Nancy and Jim dancing in Jon’s room, when she had visited to change Jon’s catheter. I wish that I had a photograph of that moment. It was just so lovely.

    When she went to Jim’s bedside, she said, “Oh Jim! You look good!”

    “Notice anything different?” I asked after a few moments.

    She noticed his shave, his color, his haircut.

    “Anything else?” I asked. She was baffled. So, I pulled the concentrator out from behind the futon. “He’s not attached to this.”

    Nancy was just thrilled. We told her the entire story. Then Jim said, “Oh, my SATS are 96 now.”

    I was standing behind Jim, and I exclaimed, “Really, Honey?! Oh, that’s fantastic!!! WOW!” I hugged him around his shoulders and kissed the top of his head.

    Hospice and DNR

    Then, we began discussing the hard stuff.

    Nancy absolutely agreed that Jim isn’t ready for hospice, especially now. She talked about hospice care, and that antibiotics aren’t given, nor food or water, when it’s end stage. She assured us that she will guide us through the process, and she knows there will be signs that end stage is imminent.

    She told us that a DNR is always revocable at any time.

    I gave her my two scenarios: 1. Jim’s at home, has dehydration, I take him to the ER, will they treat him? 2. Jim’s at home, says, “I think I’m having a heart attack,” and I call paramedics. Will they treat him?

    The answer is, “Yes.”

    First of all, they won’t know, unless they ask, as they did when Jim went to ER on 4/17, and as they did, when they were preparing to give Jonathan CPR. We can just say, “No, no DNR.”

    All About Jonathan

    Nancy was here to register Jim for home health just hours after Jonathan passed. I called her, while CSI was here to let her know, so it wouldn’t be a shock, when she arrived. Of course, it was a shock to us all.

    Today, she shared with us her favorite memories of Jonathan. His precious smile, his hugs, the music in his room, his laugh. She recalled his abilities, when she first became his nurse over 10 years ago.

    It was wonderful to hear her memories and to know that she grieves with us for all that he endured in those years. She misses Jonathan, who she has always referred to as her “favorite patient.”

    While Nancy and Jim attributed Jim’s improvements to my caregiving, I deferred to my belief that Jonathan and Michael are quite present and giving their dad the strength to carry on.

    Jim and I have had so many affirmations that Michael was participating in Jonathan’s recoveries through absolutely death-defying illnesses. We have no doubts at all that they are working on Jim’s behalf now. And mine too, of course, because any improvement in Jim’s condition is cause for celebration and joy.

    John texted this morning to ask how we are and if we need anything. When I texted that Jim was doing well off of O2, John was ecstatic. He knows that Jon and Michael are watching over us. He believes this, as we do, with all of his being.

    Today, I also coordinated the delivery of Jim’s port supplies for Nancy’s visit next Tuesday to draw labs, and for pick up of Jonathan’s left over cases of formula and his feeding pump. How conveniently that worked out, eh?

    KUDOS TO JIM!

    Jim said, “I’m sick of being sick and in bed. I’m going to get up and go the bathroom every time I need to go to get exercise and strength.” Off of O2 every time he did this, which is multiple times day and night, especially with Lasix.

    Jim did this. Jim made the commitment to do this, and he did it. This is will. This is courage. This is strength.

    This is proof to me that Jonathan, Michael, Jim and I are a unit. It took all of us, working together, to bring Jim to this point, where he can be independent of O2 and function.

    We don’t know what will happen next. But for now, we have this, and we give abundant thanks.

    We love you and pray for you and all of your loved ones, and we give abundant thanks for the blessing you are in our lives, because we also know that your love and prayers are a major part of why Jim is doing so well now.

    Thank you so very much. Thank You.

    Love & Light,



    Rose
    Hi Rose,

    YAHOOO!!!! WOW! I was jumping up and down in joy for you and Jim! I’m giving you both huge hugs through the computer right now in my excitement! Definitely Michael and Jon planned this to which I say WELL DONE BOYS AND WELL DONE ROSE ON YOUR FABULOUS CAREGIVING!!! I’m so thrilled you have no idea!! And here we were talking about end stage. Just goes to show you never really know what life holds. Perhaps this wonderful improvement was what Jon and Michael were trying to tell you in your dream too.

    I love that Nancy loved Jon so much! Glad Jim will get a bit more exercise.

    I’m glad the DNR is revocable. I would totally expect it to be as it is a personal medical choice. I’m so glad you made absolutely sure Jim will be treated when he wants to be. Thanks be to God. I pray Jim stays off O2 permanently and gets better and better.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  4. #123
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    Thumbs up Day Two Off of O2

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

    Thank you so much ANN, Marcie, SuzE-Q, Virginia, and funnylegs4!

    DAY TWO off of O2, and Jim continues to hold SATS in the mid 90s.

    This morning, he was out of breath after returning to his futon nest from the bathroom. He wanted O2, but first I wanted to check his SATS. They were 94. I suggested that he needed a breathing treatment instead of O2, but he really wanted O2, so I put him on at 1.5 liters. After a couple of minutes, he was fine. Then, I gave him a breathing treatment.

    I continue to praise Jim for taking the initiative to use the bathroom as his means of exercise and for challenging himself to do it without O2. I'm positive that this exercise has increased his lung capacity.

    While I had repeatedly suggested that we just take a walk to/from his bed to the bathroom or Jonathan's room and back weeks ago, Jim was too weak and frail to manage that without O2. He had no motivation, because he was just so fatigued.

    He lost weight, although determining how much is nearly impossible given his water weight. His weight loss was noticeable in his face, shoulders and limbs. Now, he is filling out more. It took time to build him back up nutritionally, and with God's Grace, Jim's appetite has been incredible.

    His belly is still enormous. I think we're expecting quadruplets! It's okay, Jim and I joke about this regularly and laugh. If he was experiencing pain, we wouldn't. Humor has always been our go-to tool to diffuse stress.

    Even yesterday with Nancy, when we were talking about Jonathan, I recalled a time in early 2000, when he and Michael were still in their upstairs bedroom, both in hospital beds. I was downstairs and heard a noise. I ran upstairs to find Jonathan, holding the controls to his bed. He had pushed the head and leg "up" buttons to the point of practically folding himself in half.

    I remember calling down to Jim to come up and see Jonathan. As soon as Jim walked in, we both burst into laughter, as did Jonathan, as he handed me the controls.

    I said to Jonathan, "Okay. Now, Mommy has to find a place to put the controls, so you can't turn yourself into an accordion."

    Nancy, Jim and I all laughed, knowing Jonathan's curiosity and fascination with buttons, knobs, anything mechanical. He was the master of every radio he ever had, and he had many through the years. Every time he got a new radio, we would show him the controls, and demonstrate. It only took one lesson, and Jon knew where everything was.

    If his radio was too loud, I'd call out from the kitchen, "Jon, please turn down your radio. We have neighbors." And he'd turn it down. Or he'd be searching for a station, and we'd suggest, "Jon, how about finding a station and sticking with it for a few minutes?" He'd settle on something, and after a few minutes, he'd go looking again.

    For many years, every Sunday, at 7:00 p.m., Jon would tell us, "60 Minutes." He knew it was Sunday, and it was 7:00. I don't know how, but he knew. We'd turn on his TV, and he'd say, "Radio!" He watched the TV/Radio simulcast of "60 Minutes" glued to every word.

    After 9/11, we had to wean him off of news altogether, because Jonathan and Michael were very sensitive to war and tragedy. They were stressed, sad, and physically upset by any kind of bad news, like natural disasters, plane crashes, and of course, war.

    Jon's radio was on during every Lakers' game, as he watched the game on TV. He often chose the Spanish radio station broadcast. He loved languages.

    I seem to have strayed into precious memories of Jonathan. These are the memories Jim and I recall every day together. All of the wonderful, adorable, and perfect spirits of our boys.

    How we wish that we'd all had more time together on Earth, but we are both so grateful for the amount of time we did have. Much longer than anyone ever predicted in their lifetime. So many don't have this blessing of caring for their disabled child/ren for nearly a half century (a third of a century for Michael). We know we are blessed, truly and deeply blessed.

    And, here is Jim, just like his sons, defying the odds.

    Today I said to Jim, "I can't wait to send Dr. K an email telling him that you are off O2. He's going to be very surprised and impressed!"

    "Why?" Jim said.

    "Because, a week ago, he was talking to us about DNR and hospice. Now, you're off of O2. So, he was jumping ahead there."

    "That's why I got up and started moving. He doesn't know everything. I had to do something. And we know where the energy came from."

    We do, indeed.

    Please know that, when I sign "Love & Light," I am sending you Love and Light. The same Love and Light surrounding us from your Love and Light, and from Jonathan and Michael.

    Donna recently shared this quote with me:

    Pierre Teilhard de Chardin said: “We are not human beings having a spiritual experience. We are spiritual beings having a human experience.”

    We love you and send you healing energy and light for you and your loved ones.

    Thank you all so much for sharing your love and light with us.

    Love & Light,



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

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  6. #124
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    Rose,

    Jonathan, might have been disabled in some physical ways, but in many ways he certainly was not. Love that he so enjoyed tinkering with things mechanical such as bed, radio, tv and anything else you might have handed him. This is so true of most all men. He needed to know how things work.

    So glad Jim is still off O2.
    Virginia

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  8. #125
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    Default Day Three Off of O2

    ((((((Virginia)))))) ~

    Thank you.

    Jonathan loved cars too. We have an adorable photo of him about 5 years old peering into the driver's side of our 1969 FIAT, reaching for the steering wheel. That's the last time the car had a window down!

    When Jonathan was a teenager, he was able to ride in the front seat sometimes. As soon as he got in, he began pointing at the dashboard, asking, "What's that?" for every single thing he saw.

    Before we met Jim, I took the boys to a "Friends in Flight" air show at a nearby municipal airport. Jonathan's life skills teacher and Scout Master insisted that the boys should get to fly, like all of the other people at the show. I was terrified, but Jon was so excited, so we did it. Just a small general aviation 4 seater plane. Michael and I were in the back, and Jon was the co-pilot. The pilot actually allowed Jon to handle the control for a couple of minutes.

    "Don't let Jon fly the plane!" I exclaimed, while I clung to Michael and had a hand on Jon's shoulder.

    "He's fine and doing a great job!" The pilot said. "Relax, Mom."

    They earned a wings pin, and they were so proud.

    So many times, Jim and I have pondered what would Jonathan and Michael have pursued, if they had been able-bodied. Michael might have become an artist, musician, educator. Jonathan might have become an engineer, with a zest for adventure like racing cars, flying airplanes, hiking. We can certainly envision both of them as ministers, healers, working to help those in need.

    Because, that is exactly how they lived their lives in their less than perfect bodies. Jonathan and Michael are the epitome of "spiritual beings having a human experience." I strongly believe that almost everyone, who met them, knew this about them. Plenty of those people have told me this explicitly, so I know it's true.

    For that reason, Jonathan and Michael were able to endure all the physical pain and deterioration, the seizures, the tubes, trache, catheters, etc. They knew it was temporary, and they had a purpose on Earth to teach others about The Big Picture.

    We all have this capacity within us to live as spiritual beings in a human experience, but we don't embrace it. The physical realm controls us. The more that we can let go of the physical controls, the stronger we will be physically and spiritually.

    Jim and I are working on this now, as we focus on what we can do to help him, since his physical realm options (treatments) have been honed down. We'll do what we can for as long as we can. We're surprised and thrilled that he's okay off of O2. So, we'll run with that. Keep doing what we're doing.

    We thank you, Virginia, and all of our wonderful friends here, for your love, prayers and constant support. We send your our love, prayers, and support for you and your loved ones.

    Love & Light,



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

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  10. #126
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    Rose, I love reading all your posts. I look forward to it with my morning coffee. It saddens me when the posts contain struggles and setbacks but those are the ones that truely show me your unending strength, determination and love. I've especially loved reading all the reflective stories of your boys! What a FULL life you have given them it's no wonder they are watching over you and Jim. I wish more people could read and share these inspirational stories. Full lives come in so many "shapes".
    I'm so happy to hear 3 days without O2! Amazing! Praying for continued healing and strength, and more days off O2.
    Mary Grace

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  12. #127
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    YAY FOR DAY 3 WITHOUT O2!!! I pray it continues and Jim remains pain free,

    I love all these stories about Jon and Michael! So wonderful to hear more about their minds and desires. The bit where Jon folded the hospital bed reminded me of a Spongebob cartoon in the best way. I’m glad Jon was able to laugh at himself. That’s a great quality. I’m sure when you grabbed onto Michael in the plane he was thinking “Mom, chill! My brother won’t let us crash!”

    Jon sounds like he would have been a genius inventor who knew chemistry, and calculous in another life. Michael might have been a teacher and a poet. Just a guess. I find it assuming that Jon was as much of a news and radio Junkie as members of my family!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  14. #128
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    ((((((Hugs to All)))))) ~

    Thank you, Mary Grace and funnylegs4 ~

    Today, as we were discussing Jim’s weaning down on steroids, he informed me that he’d been taking twice his dose last week, from 10 mg to 20 mg. He said he’d taken 17.5 mg this morning.

    Okay. His normal dose is 5 mg. Dr. K increased it to 10 mg to help with Jim’s breathing. At our appointment, Dr. K said, keep the 10 mg for another week, then wean to 7.5 mg for a week or so, then 5 mg. But put him back up, if he has problems.

    I began freaking out, my friends. I’ve trusted Jim to take his steroids, without my supervision,which was clearly a mistake.

    Jim was confused. I checked his bottle of steroids, but I don’t know how much was in there last week. I’ve been trusting Jim to take them as he should.

    So now the weaning will start at 20 mg and down. Then, Jim told me that, “No, I didn’t take 20 mgs. I just took 10 mg last week. But today, I took 17.5 mg.”

    Which is it?

    “If you’ve been taking 20 mg for several days, that would help to explain your erratic sleeping and being able to be off of O2. But the goal is to bring you down, and now we have to figure out the best weaning for you.” I was/am so frustrated.

    I wrote down the weaning schedule, which I think will work for him, and I told him not to take any meds without asking me first. I try to keep the meds separated, and he usually looks at the label, before he takes anything, but I can’t risk him messing up his meds.

    Jim has trouble sleeping at night, so he naps morning, noon, and evening. I don’t know how to correct this, unless it’s related to the steroids.

    It is 97 degrees here today. Jim thinks it feels “balmy.” I’m collecting my sweat in a pail. Jim can’t tolerate the air conditioning. It’s going to be a hot summer.

    Thank you all for your prayers that we get this steroid situation sorted out correctly. It’s a hit or miss kind of thing at this point.

    Our love and prayers to all of you and your loved ones ~

    Love & Light,



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

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  16. #129
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Thank you, Mary Grace and funnylegs4 ~

    Today, as we were discussing Jim’s weaning down on steroids, he informed me that he’d been taking twice his dose last week, from 10 mg to 20 mg. He said he’d taken 17.5 mg this morning.

    Okay. His normal dose is 5 mg. Dr. K increased it to 10 mg to help with Jim’s breathing. At our appointment, Dr. K said, keep the 10 mg for another week, then wean to 7.5 mg for a week or so, then 5 mg. But put him back up, if he has problems.

    I began freaking out, my friends. I’ve trusted Jim to take his steroids, without my supervision,which was clearly a mistake.

    Jim was confused. I checked his bottle of steroids, but I don’t know how much was in there last week. I’ve been trusting Jim to take them as he should.

    So now the weaning will start at 20 mg and down. Then, Jim told me that, “No, I didn’t take 20 mgs. I just took 10 mg last week. But today, I took 17.5 mg.”

    Which is it?

    “If you’ve been taking 20 mg for several days, that would help to explain your erratic sleeping and being able to be off of O2. But the goal is to bring you down, and now we have to figure out the best weaning for you.” I was/am so frustrated.

    I wrote down the weaning schedule, which I think will work for him, and I told him not to take any meds without asking me first. I try to keep the meds separated, and he usually looks at the label, before he takes anything, but I can’t risk him messing up his meds.

    Jim has trouble sleeping at night, so he naps morning, noon, and evening. I don’t know how to correct this, unless it’s related to the steroids.

    It is 97 degrees here today. Jim thinks it feels “balmy.” I’m collecting my sweat in a pail. Jim can’t tolerate the air conditioning. It’s going to be a hot summer.

    Thank you all for your prayers that we get this steroid situation sorted out correctly. It’s a hit or miss kind of thing at this point.

    Our love and prayers to all of you and your loved ones ~

    Love & Light,



    Rose
    Excuse my ignorance, why would more steroids be the reason he’s off O2???
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    ((((((funnylegs4)))))) ~

    You are definitely not ignorant! And I can certainly understand why you have that question.

    Steroids are typically used to reduce inflammation. Steroids are given to treat auto immune diseases, like RA, MS, etc. Jim has inflammation in his lungs from cancer, emphysema, and COPD. Steroids, as well as his breathing treatments, help reduce that inflammation.

    Of course, steroids have many adverse side effects, which is why Dr. K wants to wean Jim back to his maintenance dose of 5 mg/day, but only if Jim can tolerate that reduction.

    Jim's elevated liver function tests are concerning to Dr. K, and steroids can cause liver damage. It's a delicate balance.

    I'm glad that you asked. We all need to know as much as we can about everything to help others and ourselves.

    Love & Light,



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

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