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Thread: Jim Has A Fever. ER Bound

  1. #21
    Distinguished Community Member nuthatch's Avatar
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    Praying for Jim and you, Rose. I'm sure both of you will feel and rest better with Jim at home. ((((hugs))))

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  3. #22
    Distinguished Community Member agate's Avatar
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    Rose, that place they put Jim in for "care" sounds pretty bad. I'm so glad you've got him out of there.

    Very irritating how people who should know better think that a vegetarian meal consists of everything meat-eaters would eat minus the meat. Protein doesn't seem to enter their heads. So along come a bunch of carbs.

    He probably needs protein on a very regular basis.

    Signing the AMA form may be no big deal. I did that once and never got into any trouble about it.

    Good luck getting him home!
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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  5. #23
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    Oh Rose. I am sorry that NOTHING is made easier for you and Jim. I wish that nurses and the systems in care could listen to your wishes and that they would apply their strictest protocols for a patient who is immuno-compromised. It isn't complicated - they are just being lazy. One study I read said that the worst offenders re hand washing are the folks on the infectious disease teams! I am glad that you got Jim home last night but I'm beyond sad that you didn't get a rest.

    I'm not sure how much more you can take. I am thinking about and praying for you all this Easter weekend. At least it's a holiday weekend and John and family will be home (I hope!) Sending much love.
    Donna xox
    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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  7. #24
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    Hi Rose, I've been checking all day to see how you are doing - are you OK? Jim is home? I am thinking of you and praying - I hope it's better at home! Love you,
    Donna xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  9. #25
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    Default Spilling It

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

    I apologize for the length. So much is going on at once.


    Jim arrived home at 10 last night, delivered by very sweet young EMTs. Jim wanted them to stop at the door, so he could get off of the gurney and WALK into the house. I didnít agree with this, but he insisted.

    The EMTs helped him off and walked him in to his futon nest. Hooked him up to his O2, lifted his feet on the bed, helped with his blankets.

    The young man said that Jim had shared his orange sections with them. Jim said, ďYes, Rose, lets give them some oranges.Ē Of course, but I have to go out to the garage to get bags, so I wanted to get settled first.

    The young man was looking around the house. ďYou have a beautiful home. I love all of the different kinds of wood you have.Ē

    I thanked him and laughed. "If you could see it with all of the lights on, youíd see that our home is in great disrepair. We started remodeling 23 years ago. Then, our sons became ill, and then Jim, and we havenít been able to finish anything.Ē

    Then I showed them Jonís photo in the frame John gave us. I told them about Jon, and the young lady teared up. They both said how sorry they were for our losses. ďAnd you took care of them all of their lives without help?Ē Yes.

    I thanked them as I handed them their bags of oranges (they are THE BEST oranges ever). ďIt means so much to us that you rescued Jim from that place.Ē

    The young lady said, ďI wish we could do more for you.Ē

    ďYou will. Iím sure weíll need you again. I hope not too soon. I hope not ever. But ÖĒ

    HOME AGAIN

    I took all of Jimís vitals, and everything was very good. He wanted a cuppa and a jam sandwich. At 11:00 we began watching TV, and he drifted off to sleep.

    I stayed up watching him until 1:30, at which point I just had to go to bed. He was stable and sleeping well. I heard him cough a little or turn a couple of times, jumped up and ran down to check on him. He woke up at 6. I overslept til 7.

    He had 2 pees in his briefs, so we went about changing them, and as Jim stood, I saw that his under pad was soaked as was the bed. The fresh bed I had just made the day he went to the hospital.

    I am not up to changing that queen size mattress with a 5Ē perimeter that I have to tip toe around to make it. The mattress pad is probably soaked too.

    Iíd rather devote my time to Jonís mattress and disinfecting his room for Jim than deal with Jimís bed. So, we put a couple of under pads over the leakage, and we changed his briefs. This is what I meant when I said I wasnít ready for him to come home.

    The doctors and nurses and discharge people say they understand and are concerned, but they do nothing to negotiate a couple of days with Medicare to let Jim stay in the Cancer Unit.

    Jon and Michael had doctors, who negotiated with Medi-Cal to keep them in ICU. It can be done.

    Then, it was a flurry of giving Jim a breathing treatment and cleaning the nebulizer cups, making his tea, making his orange juice, taking his temperature.

    His temp rose to 100.6 this morning. He stripped off all of the blankets and his long sleeved t-shirt. In an hour, it was 99.8. In another hour it 98.6.

    Instacart and Pharmacy

    Our cupboards are bare, so I had to order today. The delivery was scheduled for 12-1.

    The pharmacy called with 3 scripts for Jim by the hospital doctor: Lasix 40 mg, a BP med, a probiotic.

    So, off I went to the drive thru pharmacy, but not before I backed into our trash bins, which I put out Thursday evening for Friday pick up. I hadnít had time to bring them in last night. The gas level was edging close to empty, but by the time I got down the hill, it stayed at a quarter tank.

    Our pharmacist and assistant are so sweet and kind. The pharmacist explained each drug and why it was being given. I told her that Jimís BP is perfect. She said most people with edema have a high BP. Not Jim.

    I knew he needed the Lasix, because he hadnít peed again as 1:00 neared. I gave him that, but not the BP med. I took his BP first, and it was 114/70.

    NANCYíS ADVICE

    I called Nancy for advice, and she and I had a very good chat.

    She told me that weíd never have a nurse every 12 hours to hang meds. They donít have nurses 24 hours/day. Their job is to teach patients, family and caregivers how to provide home care, to gather the resources to support the home care, and to visit regularly to ensure that all is running smoothly. Of course, Nancy does the big jobs too, like infusions and transfusions, port blood draws, trache care, etc.

    She said that weíd use a pump, like we did for Jon in 2012, when she taught us how to do it, and checked on us the next day, then left us on our own. We could even have an automatic pump for the meds.

    If Jim needs a saline drip, she said she could teach me how to use it too, and sheíd check twice a week to maintain his port.

    She also told me that if Jim needs to have his belly drained again, he can go to the hospital to have that and only that done. He goes to radiology not ER. He would need a doctorís order for it, so Iíd call the on call oncologist. Or maybe Dr. K could write a standing order?

    Iíll be emailing Dr. K for Monday with questions and to tell him why Jim left AMA last night.

    Since Jim didnít get a potassium chaser with his Lasix, Nancy told me to give him tea and a banana. Our bananas are ripe, which Jim doesnít enjoy unless used in baking. So, I sliced the banana and included a scoop of Cashew ďice cream.Ē Yummy. I then froze the rest of the sliced bananas to make into a frozen dessert.

    Nancy is just so wonderful and understands exactly what weíre going through. We are so grateful for her love and help.

    LASIX KICKS IN

    While I was talking to Nancy, Jim unplugged his concentrator and went to the bathroom. Small BM and urine output in his briefs. I asked him not to do that again, because I fear he will fall. I must be with him, when he gets up.

    A couple of hours later, he had a massive pee, with no leakage! His belly is beginning to come down. His vitals are good, so we are hopeful.

    VERGING ON MELTDOWN

    I canít even describe what Iím experiencing. Itís as though Iím just doing what needs to be done and being removed from all of the pain and agony of losing Jon and what Jim is enduring.

    And yes, I am feeling the anger part of grief. I donít think grief happens in phases. Any aspect of grief can arise at any time, years and years later even.

    I try to walk on the outside edge of the rug, where Jon and I were together for the last time. I havenít vacuumed. I have no time for it, for one thing, and another is how can I vacuum that sacred space?

    I finally took his seizure meds off of the counter and put them in the cupboard. Out of my view as a reminder that he isnít here for me to give them to him.

    What Iím doing is purposely avoiding going there in my grief. If I think about him too much, I will lose my strength, which I need for Jim.

    But, by doing this, I am losing more of Jon every second. My heart is so broken, and everyone knows it, but I have to keep going and be STRONG.

    I feel like Iím being punished. My whole world is crashing down on me at once. I have to fend off the pain and move forward with every moment to be here for Jim.

    Consequently, I have had moments of impatience, and misunderstandings with Jim, because he really doesnít have all of his faculties around him now. His memory is failing. Iím constantly trying to discern whether it is that, or he is dehydrated again.

    I have to nag him to drink water. He asked me to make him more orange juice today, because he doesnít like the taste of water, and a swig of juice after water makes it more palatable.

    Of course, Jim doesnít like to be nagged, and while I try to explain why he has to like water better than going to the ER and hospital, he still insists that heís drinking enough.

    Round and round we go.

    Then we come to an agreement, we hug and kiss, and all is well, until the next time I have to ask him to drink more water. Finally, today, he did.

    Time is not on our side. We know that and must be ever aware that we are only here for a short while. But it isnít ďus,Ē who are to blame. Itís the failure of Jimís initial physicians to care for him properly, and the errors, which apparently have been made with regard to Neupogen and his bone marrow biopsy.

    So, am I angry? Extremely. Iím angry with a System that shoves antibiotics of all kinds down you without regard to the consequences long term. Maybe thatís because there is no long term for the patient, but it still makes the patient more vulnerable to Superbugs.

    Iím angry that Jim didnít start on Opdivo instead of useless chemo, and that he was denied it after it shrank his tumor in half with one dose. We probably wouldnít be here in this situation today.

    Iím angry about all of the money involved in treating cancer patients, and with the quick dismissal, when it isnít in their best interest. Medicare pays $10K for one Opdivo dose, but Jim couldnít recover for another day in the Cancer Unit? Better for Medicare to send him to a hell hole of a nursing home? I felt like we were in a Third World country in that facility.

    While I am so grateful to Jonathan for choosing this time so that he could help me and his dad, I am angry that I am not allowed the time to grieve for him as I need to do. As every grieving parent needs to do. I need to break down and feel every feeling, the profound pain, the guilt, the anguish, the trauma.

    Healing doesnít begin until we go through the process. Because I am not grieving properly, I feel like I have abandoned Jon, and I am a terrible Mother. I know that sounds irrational. But grief is irrational. And my grief is raw and bleeding.

    Iím trying to find time to rest and take breaks, but they are few. If I can just get Jim to be stabilized, I will be so grateful. I know there is more ahead, and I am putting on my shield to help me cope.

    Thank you for listening and loving us, praying for us, and for your faithful 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. #26
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    I apologize for the length. So much is going on at once.


    Jim arrived home at 10 last night, delivered by very sweet young EMTs. Jim wanted them to stop at the door, so he could get off of the gurney and WALK into the house. I didnít agree with this, but he insisted.

    The EMTs helped him off and walked him in to his futon nest. Hooked him up to his O2, lifted his feet on the bed, helped with his blankets.

    The young man said that Jim had shared his orange sections with them. Jim said, ďYes, Rose, lets give them some oranges.Ē Of course, but I have to go out to the garage to get bags, so I wanted to get settled first.

    The young man was looking around the house. ďYou have a beautiful home. I love all of the different kinds of wood you have.Ē

    I thanked him and laughed. "If you could see it with all of the lights on, youíd see that our home is in great disrepair. We started remodeling 23 years ago. Then, our sons became ill, and then Jim, and we havenít been able to finish anything.Ē

    Then I showed them Jonís photo in the frame John gave us. I told them about Jon, and the young lady teared up. They both said how sorry they were for our losses. ďAnd you took care of them all of their lives without help?Ē Yes.

    I thanked them as I handed them their bags of oranges (they are THE BEST oranges ever). ďIt means so much to us that you rescued Jim from that place.Ē

    The young lady said, ďI wish we could do more for you.Ē

    ďYou will. Iím sure weíll need you again. I hope not too soon. I hope not ever. But ÖĒ

    HOME AGAIN

    I took all of Jimís vitals, and everything was very good. He wanted a cuppa and a jam sandwich. At 11:00 we began watching TV, and he drifted off to sleep.

    I stayed up watching him until 1:30, at which point I just had to go to bed. He was stable and sleeping well. I heard him cough a little or turn a couple of times, jumped up and ran down to check on him. He woke up at 6. I overslept til 7.

    He had 2 pees in his briefs, so we went about changing them, and as Jim stood, I saw that his under pad was soaked as was the bed. The fresh bed I had just made the day he went to the hospital.

    I am not up to changing that queen size mattress with a 5Ē perimeter that I have to tip toe around to make it. The mattress pad is probably soaked too.

    Iíd rather devote my time to Jonís mattress and disinfecting his room for Jim than deal with Jimís bed. So, we put a couple of under pads over the leakage, and we changed his briefs. This is what I meant when I said I wasnít ready for him to come home.

    The doctors and nurses and discharge people say they understand and are concerned, but they do nothing to negotiate a couple of days with Medicare to let Jim stay in the Cancer Unit.

    Jon and Michael had doctors, who negotiated with Medi-Cal to keep them in ICU. It can be done.

    Then, it was a flurry of giving Jim a breathing treatment and cleaning the nebulizer cups, making his tea, making his orange juice, taking his temperature.

    His temp rose to 100.6 this morning. He stripped off all of the blankets and his long sleeved t-shirt. In an hour, it was 99.8. In another hour it 98.6.

    Instacart and Pharmacy

    Our cupboards are bare, so I had to order today. The delivery was scheduled for 12-1.

    The pharmacy called with 3 scripts for Jim by the hospital doctor: Lasix 40 mg, a BP med, a probiotic.

    So, off I went to the drive thru pharmacy, but not before I backed into our trash bins, which I put out Thursday evening for Friday pick up. I hadnít had time to bring them in last night. The gas level was edging close to empty, but by the time I got down the hill, it stayed at a quarter tank.

    Our pharmacist and assistant are so sweet and kind. The pharmacist explained each drug and why it was being given. I told her that Jimís BP is perfect. She said most people with edema have a high BP. Not Jim.

    I knew he needed the Lasix, because he hadnít peed again as 1:00 neared. I gave him that, but not the BP med. I took his BP first, and it was 114/70.

    NANCYíS ADVICE

    I called Nancy for advice, and she and I had a very good chat.

    She told me that weíd never have a nurse every 12 hours to hang meds. They donít have nurses 24 hours/day. Their job is to teach patients, family and caregivers how to provide home care, to gather the resources to support the home care, and to visit regularly to ensure that all is running smoothly. Of course, Nancy does the big jobs too, like infusions and transfusions, port blood draws, trache care, etc.

    She said that weíd use a pump, like we did for Jon in 2012, when she taught us how to do it, and checked on us the next day, then left us on our own. We could even have an automatic pump for the meds.

    If Jim needs a saline drip, she said she could teach me how to use it too, and sheíd check twice a week to maintain his port.

    She also told me that if Jim needs to have his belly drained again, he can go to the hospital to have that and only that done. He goes to radiology not ER. He would need a doctorís order for it, so Iíd call the on call oncologist. Or maybe Dr. K could write a standing order?

    Iíll be emailing Dr. K for Monday with questions and to tell him why Jim left AMA last night.

    Since Jim didnít get a potassium chaser with his Lasix, Nancy told me to give him tea and a banana. Our bananas are ripe, which Jim doesnít enjoy unless used in baking. So, I sliced the banana and included a scoop of Cashew ďice cream.Ē Yummy. I then froze the rest of the sliced bananas to make into a frozen dessert.

    Nancy is just so wonderful and understands exactly what weíre going through. We are so grateful for her love and help.

    LASIX KICKS IN

    While I was talking to Nancy, Jim unplugged his concentrator and went to the bathroom. Small BM and urine output in his briefs. I asked him not to do that again, because I fear he will fall. I must be with him, when he gets up.

    A couple of hours later, he had a massive pee, with no leakage! His belly is beginning to come down. His vitals are good, so we are hopeful.

    VERGING ON MELTDOWN

    I canít even describe what Iím experiencing. Itís as though Iím just doing what needs to be done and being removed from all of the pain and agony of losing Jon and what Jim is enduring.

    And yes, I am feeling the anger part of grief. I donít think grief happens in phases. Any aspect of grief can arise at any time, years and years later even.

    I try to walk on the outside edge of the rug, where Jon and I were together for the last time. I havenít vacuumed. I have no time for it, for one thing, and another is how can I vacuum that sacred space?

    I finally took his seizure meds off of the counter and put them in the cupboard. Out of my view as a reminder that he isnít here for me to give them to him.

    What Iím doing is purposely avoiding going there in my grief. If I think about him too much, I will lose my strength, which I need for Jim.

    But, by doing this, I am losing more of Jon every second. My heart is so broken, and everyone knows it, but I have to keep going and be STRONG.

    I feel like Iím being punished. My whole world is crashing down on me at once. I have to fend off the pain and move forward with every moment to be here for Jim.

    Consequently, I have had moments of impatience, and misunderstandings with Jim, because he really doesnít have all of his faculties around him now. His memory is failing. Iím constantly trying to discern whether it is that, or he is dehydrated again.

    I have to nag him to drink water. He asked me to make him more orange juice today, because he doesnít like the taste of water, and a swig of juice after water makes it more palatable.

    Of course, Jim doesnít like to be nagged, and while I try to explain why he has to like water better than going to the ER and hospital, he still insists that heís drinking enough.

    Round and round we go.

    Then we come to an agreement, we hug and kiss, and all is well, until the next time I have to ask him to drink more water. Finally, today, he did.

    Time is not on our side. We know that and must be ever aware that we are only here for a short while. But it isnít ďus,Ē who are to blame. Itís the failure of Jimís initial physicians to care for him properly, and the errors, which apparently have been made with regard to Neupogen and his bone marrow biopsy.

    So, am I angry? Extremely. Iím angry with a System that shoves antibiotics of all kinds down you without regard to the consequences long term. Maybe thatís because there is no long term for the patient, but it still makes the patient more vulnerable to Superbugs.

    Iím angry that Jim didnít start on Opdivo instead of useless chemo, and that he was denied it after it shrank his tumor in half with one dose. We probably wouldnít be here in this situation today.

    Iím angry about all of the money involved in treating cancer patients, and with the quick dismissal, when it isnít in their best interest. Medicare pays $10K for one Opdivo dose, but Jim couldnít recover for another day in the Cancer Unit? Better for Medicare to send him to a hell hole of a nursing home? I felt like we were in a Third World country in that facility.

    While I am so grateful to Jonathan for choosing this time so that he could help me and his dad, I am angry that I am not allowed the time to grieve for him as I need to do. As every grieving parent needs to do. I need to break down and feel every feeling, the profound pain, the guilt, the anguish, the trauma.

    Healing doesnít begin until we go through the process. Because I am not grieving properly, I feel like I have abandoned Jon, and I am a terrible Mother. I know that sounds irrational. But grief is irrational. And my grief is raw and bleeding.

    Iím trying to find time to rest and take breaks, but they are few. If I can just get Jim to be stabilized, I will be so grateful. I know there is more ahead, and I am putting on my shield to help me cope.

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

    Love & Light,



    Rose
    Hi Rose,

    I hated the plain taste of water at points in my life, so I would take a few drops of Lemon juice and/or Orange juice and put the drops in BIG cups of water so the water had a taste I felt I could swallow. Try that!

    I know this probably wonít help but I will say it anyway. You have done NOTHING wrong. You are a GREAT mother! You have NOT abandoned Jon and Iím positive Jon knows that. Jon can see your intent probably even better from the spiritual world and knows it all stems from love my dear. What Iím deeply concerned about is that you are starting to really hold your feelings in. You need to break down. It wonít make you lose your strength. Let it out please. See if maybe you can speak to a counselor via phone if needed. When my relatives died and I broke down I found new strength but holding it in would drain me because the grief only grew inside me. PLEASE Donít make the mistake I did or the grief will come out at the worst time in the worst possible way. You are only abandoning yourself if you hold it in. If it is held in too long you will shut down completely when Jim needs you most. Don't do that to Jim.

    I completely understand your anger. Thatís is completely justifiable and I think you would be angry at the situation regardless of grief. Jim and Jon are expendable to ďthe systemĒ and it infuriates me to no end!
    Last edited by funnylegs4; 04-20-2019 at 10:02 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  13. #27
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    Rose, I wish I could help you! I've read your last 2 posts and first I have to weigh in about the awful treatment in the nursing home. My mom was in one for a month in February waiting to get strength for a heart valve replacement. She was miserable the treatment was as you said awful. Uncaring! she wet herself many times waiting for someone to come help her to the bathroom, then would sit waiting for help off. Stand over her telling her to "do it yourself" for things she couldn't do.The food at times was inedible. She was in tears a few times, and becoming depressed. I think the worse thing she told me was that if they complained there was "payback" !!!! This was a thing! I couldn't believe it. I will make my complaint now that she is home! She finally came home yesterday. She had her valve replacement spent about a week in the hospital and then another 2 weeks in a rehab that was supposed to be the best. My cousin even worked there in nurses training. We talked at great length and she knows of the issues and I know this is a big problem they are way understaffed BUT the bigger problem is the staff they do have do not care. We talked about how volunteers would be helpful just do do things that would give them things to look forward to. Our nursing home/rehab. is in great crisis!! The new place was no better. She was treated with no respect and not an ounce of care. We finally met with the team and sprung her. They wanted to keep her there but I told them at this point her mental health was in jeopardy. She was depressed and losing hope. We need to revamp how this system is working. Many other countries have solved this problem. The Netherlands have created adult homes that share their living space with college students who stay free and volunteer a certain amount of hours to work with the adults. There's also a model of this in I think Cincinnati. So glad you got him out of there!
    I'm so sorry that every step is so difficult and so complicated. YOu are one amazing lady! But you sure are being tested... I agree with all of funnylegs words she is spot on. I'm so glad you come here and update us I think about your family every day. I hope you feel our prayers and warm hugs from afar.
    Happy Easter! I hope you and Jim have a good day!
    Mary Grace
    Last edited by mg12061; 04-21-2019 at 04:29 AM.

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  15. #28
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    My dear Rose,
    I have no idea whether this is possible but what I thought of is this: would it be possible to set aside 15 minutes each day to meditate on Jonathan with the following words? "I love you. I am looking after Dad. Wait for me. Surround us in your love." It's so hard to meditate on Jon without being paralyzed by grief but maybe with these words and only these words?
    I am so sorry that the rehab center was awful. And I'm so sorry that you have so much work to do to get the room ready for Jim - the incontinence is so much more labor on your part. Nick is coming over today for Easter and I will ask his helper which products they use to keep on his condom cath - I know they use something. But the big challenge is that Jim moves around - they stay put more easily if a person is immobile, that is for sure.
    Funnylegs4 has a good idea about adding some juice to the water - I never drink water unless I'm working out - I just don't like the taste of it. So I always sweeten it with a bit of orange or pineapple or cranberry juice. It doesn't take much to just make it taste so much nicer.
    Good luck today dear Rose - one day at a time. One hour at a time.
    xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  17. #29
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    You are experiencing so much in such a short time. I would be totally numb. You are an amazing woman, strong and competent. A wonderful mom, wife and the hinge pin your family rests on. Take time for yourself Rose. Breath.

    When I was on lasix after the dissection, everything taste bitter and I had absolutely no appetite. The only thing I wanted was ice cold milk (and I am not a milk drinker). Nothing else tasted good. Hopefully Jim will find something that taste wonderful and be able to eat or drink it for now.

    So glad you were able to bring Jim home where he belongs. Everything else will fall into place and a new routine begun.

    You are in our thoughts and prayers daily. Sure wish we lived closer. I would love to help you out.
    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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  19. #30
    Distinguished Community Member
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    Lauren (from Leeds in the UK) sent this to you on facebook, Rose. For Jon. She can't access her account here anymore. 57486039_1116945088476389_4993518639790424064_n.jpg
    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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