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Thread: Jim Has A Fever. ER Bound

  1. #61
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    Hi Rose,

    Is getting a fold out couch bed or some kind of inflatable mattress, to replace another existing piece of furniture, for you to sleep on, an option? I think when a family member has as many medical conditions as yours has everyone should be living on the first floor. I have seen documentaries where really medically complex disabled kids lived in an upstairs and things did not go well for anyone involved. Perhaps when Dr K hears a complaint from a fellow medical professional he sees it as more legitimate than a family member. A Doc should not assume a family member is just being paranoid like that! :( I’m glad Jim is actually still mobile enough to walk to the toilet. That is a good sign! I pray and cry with you dear.

    As I said in the other thread: I have no doubt the red rose is Jon’s gift to you. ITS GORGEOUS! And I have no doubt that John’s power going out was a sign to John from Jon. I can only imagine how hard it is for you to receive the Urn but I’m glad you finally got it since I know it took awhile to find the right one for Jon. The Urn is an absolutely perfect choice! I’m glad Jim held you to comfort you that way.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  3. #62
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    Default How We Spent Our Saturday

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

    funnylegs4 ~

    Thank you for your suggestions.

    Jon's chairbed opens into a single bed, but the mattress is quite thin, and there isn't enough room in his bedroom to open it. We have absolutely no room in our living room. We have to be able to walk around the furniture. Even if we had room for it, I couldn't sleep on an inflatable bed. I have severe RA and osteoporosis.

    When Nancy told Dr. K about the IV incident at the facility, she was reporting what I told her. She wasn't present at the facility to observe the incompetence and potentially infectious conditions. I told Dr. K in 3 separate emails about the facility's failures. I was there. Why would he take her second-hand information with more authority than mine? That's what irritates me here. It seems I don't have much credibility with Dr. K, even though he knows that I've been caring for my children for close to 50 years.

    JIM'S UPDATE

    Jim has been drowsy all day, which means that he isn't drinking enough fluids, so his output has been less. He just ate half of a lovely avocado/boiled egg sandwich, and about a third of his vegetable soup, because he was full. He had his cereal this morning, with raisins, diced peaches and pears in juice, and coconut milk. Later he wanted some cashew ice cream. Then he slept and missed lunch.

    He's holding onto a temp of 100.5. I haven't given Tylenol. He is forgetting things I've told him repeatedly. He's not loopy. He just can't recall what we've talked about or follow the movies we've been watching on TMC.

    I changed his bed this morning. Thankfully, I had placed an under pad over his mattress topper, so I didn't have to wash it. He has lighter sheets now, so that will help with temperature control.

    Jim sat in Jon's recliner, while I made his bed. His SATS were much better, so we're going to do this every day. He needs to be up and out of bed at least once a day. Movement may help him pee and poop better too. He does sit up on the side of his bed to eat. He also stands at the side of the bed, when we change briefs and have a clean up. He walks to/from the toilet with no unsteadiness. But he needs more activity than he's been getting, so a move to the recliner will be helpful.

    I just want to know why this is happening, what is causing it, and how we can remedy it. We didn't get the answers to any of that in his 40 hours in the hospital. I don't want him to go back in and have the same result. Even if the only answer is to treat the symptoms, I'd really like an explanation as to the cause, because it occurred so suddenly. After Neupogen, which is working thankfully. Is that a possible reason?

    Dr. K said that he wanted Jim in the hospital and then sub acute care,"where he can be monitored." I'M MONITORING HIM! Sorry for using my outside voice. I'm with him 24 hours every day, doing everything for him, charting everything I give him, every pee, poop, pill, drink, meal, vital sign. I can monitor him. What I can't do is make this go away. If they can, then let's do it. And if they can, why didn't they do it, when he was in last week?

    I am ultra frustrated, obviously.

    As I said to Nancy, "I'm different than the other spouses Dr. K meets. They haven't devoted their entire lives to caring for two severely disabled children. They've never suctioned, reinserted a catheter, changed a trache, put on a colostomy flange, treated wounds, dealt with hundreds of thousands of seizures, sat beside their children in ICU so many times I've lost track.

    It's all new and strange and scary to people, who haven't lived for half a century doing what I've done. For that, and that alone, Dr. K should show me respect. Why is that too much to ask? I am a partner on Jim's medical team. He depends upon me to make sure that the others on the medical team don't do something to him that will harm him."

    I don't want anyone to misunderstand what I'm saying. I absolutely do not mean to disrespect anyone, nor do I mean to tout my experience.

    It's not that people/spouses/children, who suddenly become caregivers, are inept or incapable of providing care. But, they have to be taught and shown what to do, and they have to learn a vast and alarming number of medical terms, conditions, medications, treatments, etc. in a brief amount of time. When you're going through a crisis, it's difficult to learn all of that at once.

    I have learned it over nearly 5 decades, and I continue to learn with Jim. Consequently, I have a better idea of the questions to ask of medical professionals, and an understanding of the language.

    Most physicians, who attended to Jon and Michael, understood that I was not uncomfortable in the medical realm, because I'd been immersed in it for so many years.

    With Jim's oncologists, they see me differently. They don't see me taking care of Jim. They haven't even met me. So, even though they know about Jon and Michael, they still regard me as they would the spouse of any of their patients, who have never been faced with the kind of crisis cancer is.

    As I am writing this, Jim is napping again. I pray for more pee, because Lasix hasn't really done its job today. That's partly because Jim isn't drinking enough fluid. He says he is, then I look at his bottle of water, his glass of Gatorade, his tea, and his Orgain shake, and I hand him one of those.

    If there is a sub acute care facility, which can provide this level of care, I'll be happy to take a look at it. I'm sure I won't be doing that any time soon.

    Thank you all so much for your love, prayers, and continuing support of us. We love you all and pray for you and your loved ones.

    Love & Light,



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

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  5. #63
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    I feel your frustration and your fears Rose. Just know that Jim is in the best hands possible for his care. You could teach valuable information in any medical school and be way ahead of the so called professors. Serious hands on experience trumps book learning any day. You deserve respect as a team member, a spouse and a professional! The medical personnel you are dealing with have no clue what you have experienced over the years with your boys and their complex diagnoses, nor could they imagine themselves doing what you have dedicated your life to.

    My thoughts and prayers are with you and Jim. You are truly warriors in every sense of the word. May the Lords peace surround and encompass both of you.
    grandmother of Tyler (24): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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  7. #64
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    Hi Rose,

    My apologies for not understanding how cramped things are over there! I’m glad Jim’s vitals are better when he is upright. It could be that Jim is retaining fluid partly because of lack of circulation and blood flow, according to my family, so let him move around because it may allow the fluid an escape route. What Tamie said reminds me of the fact that you have a PhD in caregiving because you live it so trust your instincts. Yes exactly, it was easy for me to learn diabetes care for my BF who is diabetic. I learned it out of love for him like you learned out of love for Jim and your sons, and I learned Cerebral Palsy out of necessity for myself and know my body best. Not to show off but I have been told I should be a professor of Cerebral Palsy LOL. Dr K may know your life story but things are probably still out of context when for him when he does not see it with his own eyes and he may not have read the emails in as much detail as he should have because of being overloaded. I completely understand your frustration! As a doctor, Dr K should trust your word as you know Jim way better. I can’t stand doctors who don’t trust what patients and the caregivers tell them and their judgements.

    I can only imagine how painful it is to hear the ashes are ready. I’m surprised and saddened you can’t find an urn with a male angel. :( Bless Zach.
    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. #65
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    Default Some Progress

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

    Tamie ~

    It’s so wonderful to see you posting here again. I have missed you. Please post an update about Tyler, you, Jerry and your beautiful family.

    Thank you so much for your kind words and support as I struggle with this new, uncharted path with Jim.

    You, and everyone here, are like me. We learned by doing over many years. And we learned from each other, and our kinship held us up through the most difficult challenges. We’ve all had so many shared experiences, so we know exactly what each other is confronting, when issues or crises arise.

    Thank you for your prayers and your blessing for God’s peace. We are absorbing as much of it as we can right now. Our prayers are always with you.

    funnylegs4 ~

    No worries! You haven’t seen our home, so you can’t imagine how tight our quarters are. I was just explaining that other options are not available to us. The last couple of nights, I have gone to Jon’s recliner, but I’ve kept it in the semi-recline position, not full recline. I’m having less pain after being in the chair for a couple of hours. So, for now, that’s working.

    Thank you as always for your love and prayers.

    OUR UPDATE

    Jim had a fever-free day yesterday, and he ate voraciously. Today, he’s more fatigued. His temp rose to 100, but after removing his blankets, he cooled to normal.

    Lasix is working overtime. His urine output is incredible. So, I replenish with water, Gatorade, whatever Jim will drink. Vitals have been very good. Belly is coming down slightly.

    I emailed Dr. K to thank him for refilling Jim’s Proair inhaler. The Advair inhaler is just too cumbersome. I asked him why Jim is retaining fluids. He replied that I should give him the full 40 mg of Lasix. I replied that I am already doing that. The 20 mg was a 2 day experiment. I knew he needed 40 mg after the second day. I’m not a doctor or nurse, but I figured that one out.

    John’s Visit

    John stopped by today with a case of Gatorade, which should tide Jim over until John’s return from Derby weekend on Sunday. Of course, I can order it through Instacart, but John insists on bringing it over. He forgets that I don’t go to the stores any longer.

    He went to Walmart to pick up the mini fridge I found, but it wasn’t in stock. I ordered it on line, and it will arrive Thursday. John won’t be here, but it’s not an urgent thing. The old mini fridge is defrosted fully and clean, ready to go, whenever John has time to take it out and bring in the new one.

    John brought his handy gadget to check the pressure in our van tires. They were all below 20 and should be inflated to 35! Once again, John to the rescue with our van. He inflated all tires and said, “I feel better about you driving the van now, Rose. I want you to be safe on the road.”

    These are the things Jim always took care of, so I never had to worry about them. Jim can’t do that, obviously, any longer. So, John has taken over that role for Jim and me.

    I opened the box with Jon’s urn with Jim today. It was really packed well. It is stunning. Bold and strong. I repacked it in the box and gave it to John today to take to the mortuary tomorrow.

    John said, “I’m bringing your boy home tomorrow. My buddy. My brother. Your son. He belongs with you here beside Michael.”

    I won’t have time to undo Christmas in Michael’s room tomorrow, because Nancy will be visiting to draw Jim’s blood. It is a time consuming project, which is why it’s still Christmas at the end of April. I’m hoping that I can find time to clear off the table with Michael’s Warrior Urn to make room for Jon’s Warrior Urn. They will sit side by side. Perhaps I can do this tonight, when Jim wakes up.

    As John was leaving, I tried to give him some money to pay for the Gatorade, and he wouldn’t take it. I insisted, “Take it and place a bet on the Derby.”

    John said, “I will. You choose your horse or horses, and I’ll place your bets. Just text me your choice.”

    We’ve always loved to watch the Kentucky Derby as a family, including all of the pre-race coverage to learn about the horses, trainers, owners. It helps us to choose our favorite. Then we root for our horse in that short moment as the race is run. A lot of excitement for a brief race.

    Jon lit up every time John walked in the room. He especially enjoyed listening to John describe his Derby weekend. Jon felt like he was part of the gathering, especially when John would say to him, “Dude, one of these days, we’ve got to get you to Vegas for Derby weekend!” How Jon would have loved every minute of that.

    Grieving

    Our home feels so empty and quiet now, with Jon not here with us physically. We are terribly lonely for him, his smile, his laugh, his outstretched hand and open arms for hugs, his … his everything.

    There is no soul wound deeper than the loss of one’s child. There is no sorrow more profound, no aching more painful. There is also nothing more overwhelming or difficult than moving forward, when your heart is shattered, and a part of you is no longer physically here.

    We persevere, because we must. Others depend upon us. Our grief can be a Debbie Downer for others, who may not understand that a parent never “gets over” the loss of her/his child. So, we don a mask, and we pretend to be okay and strong for others.

    Inside, we are torn to shreds. We’re easily confused, forgetting things, sleep deprived, depressed, filled with anxiety and guilt, vulnerable, in shock. Until we talk to other grieving parents, we think that we’re losing our minds. In some ways, we all are, but at least we know that we’re not odd or alone.

    Home Again

    Having Jon home will help me, as it did having Michael home. Now, they are back in my care. I know that these are their ashes, the remains of their Earthly vessels. In any form, they are here and always will be, until we are all reunited in Bliss and a Living Reef.

    After my mother passed, I called my grandmother every day in my mother's place about 4 in the afternoon. By that time, Jon and Michael were home from school, watching MTV videos and chilling before dinner.

    Every day, Grandma would answer and say, “Rosey, are your boys home? Are your Angels safe under your wing?”

    I would answer, “Yes, they are Grandma.”

    “I know you don’t feel comfortable until they are home with you. In your care. How are our boys today?”

    Grandma was a jewel. She was also a grieving mother. She was 89 years old, sitting next to my mother’s casket, sobbing and calling her, “My baby girl.”

    And, when Grandma wailed, “Who am I going to talk to everyday now?, I held her and whispered, “Me.”

    Thank you all so much for talking to me everyday, for listening, for loving, praying, caring for us and blessing us with your friendship.

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

    Love & Light,



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

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  11. #66
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    Default Blood Results, Bath, and Beyond

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

    Dr. K's assistant called today with orders from the doctor. Increase potassium dose, as his potassium was low. Keep 40 mg Lasix dose. Increase Prednisone from 5 mg to 10 mg/daily.

    Blood test results:

    WBC: 2.4 (Last week: 4.1) Platelets: 23 (last week 40) Significant drops.

    If Jim needs another Neupogen injection, then I've asked Nancy if she can administer it at home. That would be best. Jim is simply not up to going to the infusion center. Or anywhere.

    But, if he needs platelets and Neupogen, then he can spend another 40 hours in the cancer unit and get it done. They can also drain his belly while he's there. I don't have a problem with him being in for that reason. But he's been home for 2 weeks now and doing fine, so he didn't need to go in or to be in a sub acute care facility.

    He hasn't been running a fever for days. When his O2 cannula is in his nostrils and not on some other part of his face, his SATS are in the mid-90s. But he has gotten weaker in the past few days. Clearly the drop in WBC and platelets is affecting him now.

    He had a great appetite yesterday, but today he's only had his cereal and an orange. He wants to sleep constantly.

    This morning, Jim told me that he wanted to go upstairs to take a shower. I said, "Never. Not going to happen. You aren't able. How about the shower downstairs?"

    Again and again, he's complained about the shower head in the downstairs bathroom, and why don't I call a plumber to get it replaced. Well, you know why. He forgets sometimes that our life has been nonstop crisis since last Fall. We never used the downstairs shower, so it wasn't a priority. And now, I don't have time for a plumber.

    There is nothing wrong with the shower head. It just isn't the same as the one upstairs, which is removable. I tried to explain that all he needs is for the water to run over him, soap him up, wash him off, get out, dry off, get dressed. This isn't going to be a long, luxurious shower. This is to get clean.

    He hasn't had a proper bath in 2 weeks.

    So, I ended up giving him a bed bath. He sat up on the side of the bed. The water in the basin cooled too quickly, so I ran back and forth to the bathroom with the basin 5 times. I shaved him, as I'd been begging him to let me do, before it got long and unwieldy again. Too late. From now on, he's going to use his electric razor every other day, because shaving Grizzly Adams is taxing for me.

    I don't know whether Jim is strong enough to climb in and out of the tub shower safely, so this will have to be our routine. I'll have to find better ways of bathing him. He is always cold, and the bath put him into shivers. He even ate his cereal under his covers, while laying on his bed.

    We have to be so careful, because he can be wobbly, and I'm not strong enough to hold him up. In the bathroom, he grabs the handle on the shower sliding door. I have to remind him that it moves and isn't stable. Grab the counter, grab the bathroom door, not the handle, the door.

    I've thought about a walker, but our bathroom is tiny. The O2 concentrator has to be in or outside of the bathroom. A walker would present an obstacle, unless Jim could use it to get to the bathroom, leave it to walk into the bathroom and sit on the toilet, then use it once he got out of the bathroom.

    I fear Jim getting up during the night, when I'm in bed sleeping, not calling me, which I beg him to do, and falling. That would be disastrous. So, I'm going to have to stay downstairs in Jon's recliner with him every night to ensure he doesn't do that.

    Unfortunately, I've determined that Jim would be unsafe in Jon's bed, if he sleepily or was in a delusion state tried to get out of Jon's bed to go to the bathroom. He would surely misstep and fall. Jon's bed only has rails at the top, not at the bottom, as he never tried to get out of bed, of course. We looked for bottom rails, but none of them fit his bed.

    I never know what to expect next. I'm flying by the seat of my pants, and I'm asking for Divine Guidance.

    Your love, prayers, support and constant friendship are a blessing to us, and we give thanks for you and pray for you and your loved ones.

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 05-02-2019 at 07:44 PM.
    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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  13. #67
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    Hi Rose,
    It is very worrying that Jim's WBC and platelets are down again. Of course you are absolutely right about the best course of treatment - day visit to the hospital and never again to the sub acute centre. I am thinking about the bed rail. I think Jon's bed might be similar to Nick's. You have an electric alternating air mattress, right? I'm not sure the type of hospital bed frame you have but I am wondering whether any of these rails might work - amazingly Bed Bath and Beyond has the best selection online (much better than the medical providers) https://www.bedbathandbeyond.com/sto...nior-bed-rails. For my Mom (but she had a regular bed) we used one like this: 107557860583949p.jpg and we placed it about hip level in the bed so that it prevented her falling out of bed - it was just enough but not too much. I don't know, maybe a vendor would send an OT to assess your needs and make a recommendation? I tried looking too for an adaptor for changing the shower to a hand held. I wondered whether there might be some version that did not require a plumber. Those versions exist but only for sink faucet to hand held (like we used to use for hair washing in the sink). I wondered whether there was any way that one of these adaptors could work from the sink to the shower in your bathroom - some of them come with long hoses because they are used for washing pets outdoors. Anyway, these are all questions for an OT - maybe one could make a home visit and help you figure out how to make some of these activities easier for you and Jim. 5 trips to refill warm water is just too hard for you, Rose! I know that you are doing a herculean job looking after Jim and that you think of EVERYTHING that could be done - I just wish I could wave a magic wand and make it easier. Sending love 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. #68
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    Smile Thank You Donna

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

    Thank you so much for all of your research and suggestions! I can't tell you how much I appreciate your efforts to improve our situation.

    Bed Rails: The constraint is related to the structure of Jon's hospital bed, as well as the configuration of his mattress, which has bolsters on the sides. We explored every possible option over a long period of time and consulted PTs in our search for longer bed rails. We have two sets of bed rails in the garage, which didn't work.

    I am concerned about Jim trying to get out of Jon's bed without my supervision. He forgets, becomes disoriented, and he does whatever he does. The mattress is slick, and he will slide down as Jon did, only even more, because he already slides down in his futon bed. The difference is that Jim can use the firmness of his futon bed to help him hike himself up in bed. In Jon's bed, he won't be able to do that. I am not strong enough to lift Jim in bed.

    Nancy, Jim and I discussed finding an alternating mattress overlay for the futon bed to help control skin breakdown. Jim has a spot on his right bum cheek, on which I put Calmoseptine today. This is one of the reasons that I'm trying to get Jim up and out of bed as much as I can. But he is fatigued and wants to sleep.

    I don't know whether our nursing agency has OTs, but I can ask, and if not, maybe we can get a referral. You're very right in that we need professional guidance here.

    I'm going to ask John for advice on changing the shower head. He can probably do it, as Jim would, if he were still able. But I still don't know how safe Jim will be getting in and out of the tub/shower. It's a big step in and out.

    Hospital bed baths are basically a wipe down with antiseptic wipes heated in a microwave. You may be clean, but it's not as pleasant as soap and water, if the water is warm enough. If it doesn't already exist, we should invent a bedside bath basin with a warming element.

    You're always there to help me with ideas and gizmos and gadgets. Thank you, Donna, for everything.

    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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  17. #69
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    Hi Rose,

    I have a rail and a seat in my bathroom near my tub, bought from home shopping to help with my mobility and to ensure I could get into a safe position if I ever become dizzy again. My doctor said a hot bath may cause me to faint. Can John install something like what I have for Jim?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  19. #70
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    ((((((Hugs to All)))))))~

    funnylegs4 ~

    Thank you for your suggestion. I'm not really confident that Jim can maneuver getting in and out of the tub/shower, regardless of what adaptations we make to it. Even a shower chair could be difficult for Jim. Our bathroom is tiny. I mean, TINY. No room for any adaptations or equipment.

    I may try giving Jim his bath, while he's in the bathroom on the toilet. Might as well multi-task. That way the water is right there, so I don't have to worry about it going cold.

    ALTERNATING PRESSURE MATTRESS OVERLAY

    I ordered one from Amazon today to be delivered tomorrow. It had the most reviews and 78% of them were positive. This is a temporary option for Jim to remain on his futon nest.

    Jim and I discussed him using Jon's bed and mattress today. He said he understood why this is so difficult for me.

    I explained that having him in the living room made him more accessible than in Jon's room. I also explained that I haven't had time to thoroughly clean Jon's mattress and room to prepare it to meet his needs.

    Jim said, "I know how hard this is for you. Of course, I do. This mattress overlay will work just fine."

    Jim does have a spot on his right bum cheek, which I've been slathering with Calmoseptine. He has a bruise on his right side/back once again. Likely from leaning over on his wedge. That's the thing about the futon. He has to have the wedge to be upright. In Jon's bed, we can just raise and lower the head of the bed.

    If/when Jim moves into Jon's room, I will sleep on his futon, so I can be closer to him.

    Somehow, I have to find the strength to clean Jon's room. The flakes of skin from his lymphedema-scarred legs are still on his mattress. The full bag of formula I hung on his IV pole on 4/11 is still there. All of Jon's equipment is still there. I can't begin to describe how painful this is for me.

    Meanwhile, Jim has had a fever the past two days, after a week without fever. I attribute it to his less than enthusiastic consumption of fluids. He tells me that he's drinking, but I see the levels in the glasses and bottles, and I know he isn't.

    So, I rehydrate him, and he had his Lasix, which worked too well. So more fluids. And I'm nagging and cajoling. His temp came down to normal.

    At 10:30 last night, his temp read 104.2! ER here we come. But, Jim has a tendency to forget that he has a thermometer under his arm, moves his arm, and the thermometer falls on the floor. So, I retrieved and cleaned with alcohol Jon's thermometer. His temp was 101.5. Tylenol, water, Gatorade.

    This is discouraging, since we had a fever-free week prior to this, so I have to keep on nagging Jim to increase his fluid intake.

    Nancy will be here Tuesday for a blood draw. We'll go from there, I guess.

    Thank you all for listening, praying for and loving and supporting us. We love you and pray for you and your loved ones.

    Love & Light,



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

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