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Thread: Jim Has A Fever. ER Bound

  1. #71
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    Rose,
    Bathing Jim on the toilet is a great idea! You are so right that the warm water will stay warm and it won't be so much bending for you. If you are washing Jim's legs and feet, maybe a pillow for your knees on the floor would be a good idea - or perhaps Jim can bend over to wash his own legs? The mattress cover sounds like an excellent solution for Jim and for you.
    Rose, this may be a very bad idea, but I wonder whether it might be slightly easier for you if an outside cleaning company came in to do Jon's room (you could either supervise or you could just be outside the room depending on how you feel). Maybe cleaning Jon's room is just too too hard for you right now, but it has to be done, so maybe others could do it? Anyway, just a thought.
    I'm off to Montreal now to visit my sister and I'll be gone a few days. Take care my dear. Sending much love, Donna xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  3. #72
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    Rose, I've been reading your updates often. I just don't always get time to respond. Please know that you are in my daily prayers. So glad Jim's temp was NOT 104 and no ER. If you do go to the ER do you call an ambulance or drive him? I only ask because I believe (at least in my experience) Getting through the process of signing in and such is way quicker.
    Great idea for bathing on the toilet. This is what I did for Kathleen when she had her cast on. I could run warm water all over her to rinse well and the water just went right into the toilet. I hope it works out well for you. Thank you for all the updates. Healing prayers always coming your way.
    Mary Grace

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  5. #73
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    ((((((Hugs to All)))))) ~

    Donna ~

    I know youíre in Montreal now. I just wanted to respond to your post, so I donít forget. And yet, I thought I posted this last night! So, I did forget!

    Thank you for your suggestion about a cleaning crew for Jonís room. As you guessed, that presents some issues for me.

    I couldnít handle strangers cleaning Jonís room. Jonathanís room is a sacred place, and cleaning his room with reverence is my honor as his mother. Itís also very important to me in terms of coping with the trauma and healing in the long term.

    A huge part of cleaning Jonís room involves clearing out his cupboards, cabinets, and drawers. Only I can decide what to keep and throw away.

    In these raw, freshly painful days after Jonís passing, I have needed to leave his room fairly undisturbed. I am gradually making changes out of necessity for Jim. It is excruciatingly painful for me, and I feel rushed to get it done, without the time I need to process the pain of doing it.

    Jim understands this, and he feels guilty, because he needs so much time and attention. I reminded him last night that this is why Jon chose this time to leave us. He knew Jim needed my care.

    I can only do so much and handle so much stress and grief. So, I do what I can everyday to move forward, while feeling like Iím being pushed backwards.

    Sixteen years ago, when Michael passed, I was younger and healthier. Time has taken its toll on me, and now, Iím grieving for Jon, while doing everything I can to keep Jim alive.

    I walked this morning, and I realized that I donít have the stamina to take my entire walk. And that is the short version of my walk. I took a short cut so I could sit at the golf course overlook. Itís been so long since Iíve walked the trails that Iím out of shape and have to start over to build up my strength.

    ALTERNATING MATTRESS OVERLAY

    We opened the box and examined the overlay today. Iím airing out the mattress in the garage to off gas it, since it is vinyl. Itís very simple, and it wasnít expensive, so if it doesnít work, weíll try another option.

    Jim thought it looked suitable.

    NURSE VISIT

    Jim and I were napping, when Nancy arrived! Since Jim was already laying on his side, she first looked at the wound on his right bum cheek. She designated it Stage 2.

    She applied Hydraguard, which we used on Jon, and a 3x3 Optifoam pad. Jim said it felt better.

    We are using Jonís supplies. Iím not using anything that we used on Jon. Everything is new and unopened.

    I showed Nancy the mattress overlay box, pump etc. She agreed that this would help heal Jimís wound.

    It isnít lost on me that Iíve gone from treating wounds on Jonís bum to treating wounds on Jimís bum.

    Nancy is such a pro with the port, and Jimís blood draw went smoothly. As always, she keeps everything sterile. We wait and pray for good results.

    Jimís vitals are excellent today. Nancy and I agreed that we wish that we had Jimís BP.

    Jimís lungs sounded better to her than they did on Friday.

    Overall, Jim feels better too. He sent me to bed at midnight. He called up to me about 4 a.m. to go to the bathroom, but took himself, when I didnít respond. Must get intercom or something.

    He also changed his briefs twice at bedside, walked into the kitchen, made a cuppa, and got a couple of cookies, while off of oxygen. His SATS are 95 today on 3 liters (down from 4 liters).

    ďYou keep this up, and Iím gonna take a spa day!Ē I teased.

    ďGreat!Ē Jim said, ďI mean it! That would be wonderful for you.Ē

    And then, I gave Jim a breathing treatment and made his breakfast.

    FROM CHAOS TO CALMING

    I have long held the belief that our home is a reflection of ourselves. If our home is out of order, we are out of order. I always have a sense of satisfaction, when Iíve cleaned, reorganized, decluttered our home.

    Since the morning of April 12, I havenít been able to care for our home as I should, maintaining it other than the very basics. For Jimís and my benefit we need a clean home.

    Today, I set off our Roomba, Daisy. I have to follow her around and rescue her from all of the obstacles on our floors, although I try to remove as many as I can first.

    As I was cleaning Jimís bathroom, Daisy was vacuuming the rug in Michaelís room, where I last held Jonathan. I wanted to stop and redirect her, but I knew that this needed to be done. Jonathan wouldnít want us to have a dusty rug irritating our respiratory systems.

    ďI have to let go,Ē I repeated in my head. My heart felt differently, but I let my head rule.

    As part of the bathroom cleaning, I gathered Jonathanís bath basins from the tub, carried them to the trash bins and placed them in the recycling bin. His urine collection canister went into the trash bin.

    I became Daisy. I was robotic. Go here. Do this. Feel nothing.

    Feel nothing, as I discard the basins, which I used to give Jonathan a spa day. Feel nothing, as I discard the canister, in which I collected and measured his urine output to ensure that he was safe.

    Repress, Repress, Repress.

    I am not calm. I am inured.

    It shouldnít be this way. But this is how it is.

    I canít even think about a memorial service for Jonathan. That breaks my heart into more pieces than the ones Iíve already lost.

    Obviously, grieving for Jon and caring for Jim places me in a complex situation, filled with grief, fear, hope, and anxiety.

    So, Iím taking it one minute at a time, one breath at a time, one prayer at a time.

    Thank you all for your love, prayers, continuing support and everlasting friendship. Thank you for listening and allowing me to spill it all out to you.

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

    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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  7. #74
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    ((((((Mary Grace)))))) ~

    I haven't tried bathing Jim on the toilet yet. So many other things happening every day.

    Jim goes to ER via ambulance, because he's on O2 and not strong enough to walk any distance. He's always ensured a bed right away, when he arrives by ambulance.

    This morning, he has a temp of 100. His SATS are only 91 after a breathing treatment, and his heart rate is elevated. This is unsettling, since everything was perfect yesterday. We hope that he smooths out during the day. I'm going to strip his bed and put on his mattress overlay today.

    Thank you so much for your prayers. You, Kathleen and your family are in our prayers too. Hope that all is well with you.

    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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  9. #75
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    Rose, would one of the two way things that parents get to check on their children when they are in another room work for you and Jim? I doubt that one would be very hard to hook up. I feel sure John could easily do something like that for you.
    Virginia

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  11. #76
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    ((((((Hugs to All)))))) ~

    Virginia ~

    I ordered a caregiver's pager and call buttons today. It will be delivered tomorrow, along with more briefs, Cavilon skin prep, and Optifoam pads.

    I've also been shopping on line today for a wedding ring for Jim, since he lost his wedding ring after one of his hospitalizations. I could never replicate his original, but I found one today that is similar. I want to surprise Jim, but I can't remember his ring size. So, I'll have to ask him or figure out a clever way to determine his size.

    Jon and Michael gave Jim a gorgeous Native American ring for his right hand with gemstone inlays. We had to return it a few times, because the inlays fell out. Jim lost that ring years ago, while working on some project in our house.

    Maybe when we're all reunited in Bliss, and our house is sold and gutted for remodeling (that's what new owners do here), someone will find Jim's ring. They won't know the meaning of it, or how special it was to Jim and our boys. But we know.

    I hit the floor running this morning at 7 a.m. for Jim's breathing treatment. I took a walk and was able to complete my "short" trail walk. Then it was time to change Jim's briefs and make his breakfast.

    After that, I stripped Jim's bed, while he sat in Jon's recliner. I placed, assembled, and inflated Jim's mattress overlay. Then, I made his queen size bed. Jim returned to the bed, and so far, he is pleased with the alternating mattress overlay. He says that he can't feel the alternating cells, so I hope that's good. It alternates every 6 minutes. The pump makes no sound at all, which is very good.

    I ordered from Instacart, and while the shopper was en route, Jim needed to go to the bathroom and have another breathing treatment.

    I brought in the groceries, wiped it all down with alcohol, and put it away. Then it was time for another meal for Jim. From Instacart, I ordered my favorite comfort food, Beecher's World's Best Mac and Cheese and joined Jim for lunch.

    Breathing treatments are every 4 hours, and Jim really needs them. I also have to give him his meds throughout the day, especially Lasix and Potassium. He didn't want to take the extra 10 meq of Potassium today. I got tired of explaining it to him, so he only took 10 meq. He did have a whole banana at breakfast.

    Lasix works well with Jim, so we're both "on the go" frequently. When he feels a BM, I have to switch off the O2 concentrator and unplug it, follow him to the bathroom with the O2 concentrator, plug it in, then warm up the wipes in the microwave (Jim is sensitive to cold), gather his briefs, wound care treatment, etc.

    I still have this stupid cold or whatever it is, and my prayers for it to GO AWAY! are not receiving the response I desire. So, I'm wearing a mask and gloves when tending to Jim, or making his food, putting together his breathing treatment, or handing him pills, and avoiding contact with him. Wearing a mask, when you're congested, is very counterproductive. You're breathing in your own CO2. One of the many reasons why I am so very tired.

    Tonight, I was preparing Jim's dinner, and while the samosas were baking, we changed his briefs. A few minutes after we finished, he said, "I need to pee again, let's go to the bathroom."

    Got him back to his bed, served his dinner.

    That's 12 hours so far.

    I've thought of every option, from hiring help to the most elite sub acute care facility (as if there was one), and none of them are viable. Jim needs me to care for him. He loves Nancy, and she is a wonderful, fantastic nurse and a member of our family. Jim has little trust now, after the facility experience, so he is relying on me. He truly doesn't want to return to the hospital, unless he has to go there for treatment unavailable at home.

    But Nancy does IVIg infusions at home, PICC lines at home, antibiotics at home, and could probably give Jim a Neupogen injection. Maybe even transfuse platelets. Medicare may not pay for it, however. Medicare will cover exorbitant hospital costs, but not home care. It makes no sense.

    Jim worries about me, of course. He kisses me on the top of my head, when we're changing his briefs, thanks me profusely for everything I do for him, reminds me continuously how much he loves me, and has said many times how sorry he is that he has so many needs, when I should be grieving for Jonathan.

    When we exchanged our vows nearly 25 years ago, we meant every word. We knew that life would change drastically through the years with Jonathan and Michael. We knew that we would age, as we were middle-aged then, and our bodies would rebel from all the challenges we put them through in our youth. Jim carrying tons of steel on his shoulders. Me carrying my boys up and down the stairs, in and out of chairs, beds, tubs, off the floor, etc.

    We promised to be there for each other no matter what. Sickness and health, richer or poorer, for better or worse. And here we are.

    Saturday is May 11, which was Mother's Day in 2003, when Michael coded in ER. Mother's Day is May 12, one month since Jonathan passed.

    One minute. One breath. One moment at a time.

    I need to find Jim's Al Green CD, so I can play this for him:

    https://www.youtube.com/watch?v=COiIC3A0ROM

    Let's stay together. Loving you forever.

    Thank you all so much for your love, prayers, and allowing me to share this journey with you.

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

    Abundant blessings upon you all ~

    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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  13. #77
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    My dear Rose,
    I have said this before, but reading your posts is like a movie playing in my head. I can see you robotically cleaning, pushing down the grief, concentrating hard on your hands and the surface that you are working on. You cannot do anything but what you are doing. Getting through the day and helping Jim the best you can. I'm sorry that you can't walk as usual and that you feel weaker, but that doesn't surprise me. Your body is tired, but so is your spirit and your heart. You need rest and I'm so glad that a bench was where you needed it to be. I know how much you love dogs and Daisy, Rose. Here is a photo from my walk today - Daisy found a bog and lay down right in it! Then she chased a stick and I snapped this photo - one very muddy dog! Attachment 5214Attachment 5214Attachment 5214 Oh dear I think you will see multiple images of the same pic - oh well. Rose my dear, I hope you are having an OK day today - that Jim is feeling alright and that you are surrounded by the spirit and love of your sons who are together now in God's arms. 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. #78
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    Thumbs up Making Progress

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

    Jim had a thorough assessment by Nancy yesterday, so weíre staying on top of everything.

    Just think of how much money weíre saving Medicare:

    Me: Unpaid 24 hour caregiver
    Nancy: RN home visit 2 x week
    Us: We pay out of pocket for Jimís port supplies
    Us: We paid for his alternating mattress, his briefs, his wipes, his under pads, gloves, masks, gowns, wound care supplies Ö

    Versus Sub Acute Care Facility? Yeah, pretty good deal for Medicare. But an even better deal for Jim, who would be in dire straights now had he remained at that ďfacility.Ē Or perhaps, at the worst, Jim would be with Jonathan and Michael.

    Jimís wound is looking very good, so we continued with his treatment. The alternating mattress seems to be doing itís job, which is very good news considering that it was inexpensive.

    Jimís WBC, platelets, Potassium, Magnesium, and all his RBC results are stable. His vitals were amazing. Output is great, appetite is good.

    He continues to get out of breath with exertion. I follow him to the bathroom with the O2 concentrator. But any effort in movement is often overwhelming for him.

    Yesterday, he sat for several hours in Jonathanís recliner, while I stripped his bed and washed and replaced his sheets. We can thank the wonders of Lasix for releasing the flood gates for that one. Jim did well sitting up that long. At least heís upright and moving from place to place.

    Today, I bathed and shaved Jim in the bathroom on the toilet. Success! Continuous hot water without me running around to get it. Jim felt so much better being clean and shaven. I told him that we need to do this at least 3 times a week. More if heís up to it. He agreed.

    The caregiver pager system I ordered doesnít work. I had to pry the call buttons open with a small screwdriver. My hands arenít that strong, but itís amazing what I can do when I have no other options. Got the batteries installed in everything. But it does not work. Back to the drawing board to find something that will work.

    We give thanks for these blessings and pray that they continue for Jim. so he can be strong enough to have radiation on his lung tumor. We also pray that the tumor is stable and that there will be no metastasis as we endeavor to heal Jim for that treatment.

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

    Blessings upon you all ~

    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. #79
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    Yay Rose! So glad the bath worked! So glad he's doing better but sorry he's out of breath! Yes home care is always cheaper but insurance does not care and it makes no sense.
    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. #80
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    This is great news that Jim is stable and that is all because of you, Rose. The bathing setup sounds great! I sure hope that you are able to find an intercom system that works. Thinking of you on Mother's Day, Rose. You are a role model to so many of us - we look to you to show us how to mother our complex, beloved children. 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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