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Thread: Jim Has A Fever. ER Bound

  1. #51
    Distinguished Community Member nuthatch's Avatar
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    Dear Rose,
    I am so sorry you and Jim are going through so much in addition to mourning the loss of your dear son, Jon. It's just heartbreaking!

    Did I read correctly, that Jim is not taking a potassium supplement while on Lasix? If so, that is very dangerous!
    A doctor once had me on a diuretic in addition to a potassium capsule for lymphedema. Then she upped the diuretic because it was having no effect on the fluid in my legs and feet.
    Besides peeing every 5 minutes, I became extremely weak, heart was all out of kilter (excuse my medical terminology) so much so that I felt like I was on the edge of death. I asked to be taken to the ER.
    There, they checked my potassium level and immediately gave me a glass of orange flavored liquid to drink. It was a powder that is mixed with water called Klor-Con and I was told it was a quick way to replace potassium, much better than any pill. Your doctor can prescribe it. It comes in a box of individual packets. You just mix a packet of the powder in 4 ounces of water or other beverage. Tastes like Tang ( remember that?)

    Overuse of diuretics and too much water can be problematic. I hope you can get some professional direction on this problem soon.
    Keeping you both in my prayers. Hugs.

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  3. #52
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    Dear Rose,
    You have never nursed Jim (or anyone) through cancer before, so it sounds like such a terrible thing to try to judge new symptoms and not know whether to call 911, try treatments at home or do nothing and wait. You need support for decision making! Is there any possibility of getting Jim on to hospice at home so that you have someone to call and talk things over with when new symptoms arise? Hospice has a such a different (and wonderful) approach to comfort and staying home, out of the ER.
    Were you able to get in touch with Dr. K? The fluid balance is just so tricky and it sounds like it's very unpredictable and changing constantly.
    My dear friend, I hope Jim enters a stable phase very soon. Praying for you. 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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  5. #53
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    Quote Originally Posted by Donna Thomson View Post
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    Dear Rose,
    You have never nursed Jim (or anyone) through cancer before, so it sounds like such a terrible thing to try to judge new symptoms and not know whether to call 911, try treatments at home or do nothing and wait. You need support for decision making! Is there any possibility of getting Jim on to hospice at home so that you have someone to call and talk things over with when new symptoms arise? Hospice has a such a different (and wonderful) approach to comfort and staying home, out of the ER.
    Were you able to get in touch with Dr. K? The fluid balance is just so tricky and it sounds like it's very unpredictable and changing constantly.
    My dear friend, I hope Jim enters a stable phase very soon. Praying for you. xoxo Donna
    Donna, I'm all for Hospice but Rose would have to make clear whether or not Jim wants to continue treatments for things. Sometimes Hospice just gives you pain relief etc without treating underline causes. I'm sure each situation is different. Good idea to make Jim's desire to be home clear now regardless.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  7. #54
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    @Funnylegs4 Absolutely, you right of course! If radiation is off the table then it might be worth exploring.
    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. #55
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    Quote Originally Posted by Donna Thomson View Post
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    @Funnylegs4 Absolutely, you right of course! If radiation is off the table then it might be worth exploring.
    Thanks! Yes better to explore all options so Jim can live out his life where and how he wants with the people who love him the most. I pray some type of treatment and a better condition awaits Jim just around the corner.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  11. #56
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    Question The Root of the Problem

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

    nuthatch (Joan) ~

    Thank you so much for your prayers.

    We know from giving Jon Lasix that Jim needs a potassium ďchaser.Ē But the hospital doc, who discharged him, overlooked that. He also prescribed a BP med, which Jim doesnít need, since his BP is low already.

    Dr. K corrected that today, after receiving my emails and talking to Nancy. Jim has a script for 20 mg potassium daily. Interestingly, Jimís potassium level yesterday was normal. And magnesium. And sodium.

    I grew up on Tang. However, my mom also bought frozen orange juice occasionally. Nothing but fresh squeezed orange juice from luscious local orange groves for Jim and me now. We buy them by the case and give them to guests (Nancy, John, etc.).

    Iíve reduced Jimís Lasix by half, and it worked just as well as the full 40 mg. Iíll be happy to have potassium for him now, because I fear what you experienced happening to him. Iím so very sorry you had to go through all of that.

    I didnít get a chance to post about your poppies, by the way. Gorgeous! Your area is beautiful too. Iím so glad you live in a peaceful, serene place.

    Donna and funnylegs4 ~

    Thatís correct, funnylegs4. Hospice means comfort care without intervention. Jim still wants to try to have radiation treatment on his tumor. Heís not ready to give up yet, and with the improvements in his blood work, if we can get this current issue resolved, he could still get it done.

    I mentioned hospice to Nancy today, and she said, ďWell, they donít hang IVs or do anything related to treatment.Ē

    DR. K AND CARE

    Dr. K called leaving a message in response to my email from yesterday, in which I described Jimís return to normalcy at the end of the afternoon. Dr. K said, ďHis labs are good, actually, but Iím concerned about the recurrent fevers and fluid retention. He should be in the hospital, so we can manage this for him.Ē

    Okay. April 17 at 9 p.m., I took Jim to ER for this very reason. At 4:30 a.m. April 18, Jim was in his bed in the cancer unit. On April 19, at 1:00 p.m. Jim was discharged. Told to go home. Thatís about 40 hours in the hospital, less than 2 days.

    They temporarily remedied his situation, but they didnít solve his problem. They didnít provide an explanation or prevention program so it wouldn't recur, which it has. So, how is this time going to be different?

    We go in for less than 2 days, come out, same thing happens? The point of this is Ö what?

    Sub Acute Care

    Then, Dr. K said, after having read my list of 10 things wrong with the facility, starting with putting in an IV without washing your hands or wearing gloves, ďAfter heís discharged, he should go back to the sub acute care facility for a little while, so we can keep track of him. Maybe you just NEED TO GET TO KNOW THE STAFF THERE.Ē (my emphasis)

    I canít count the number of hospitals, doctors, nurses, therapists, specialists, technicians, you name it, I have met in 50 years with my boys. I can suss out a place, before I step through the door, and it only takes me a few seconds to recognize incompetence, neglect, danger, harm, and lack of supervision.

    Jim was only there for a few hours, and I already had a list of 10 serious infractions.

    So, I emailed my reply, which Jim read and agreed with, to Dr. K. I reiterated the two top complaints, and I asked him, ďWould you put your loved one in this place?Ē

    I also said, ďWe never put our sons in a facility. Jim doesnít want that either. So, we have to work out a plan for home care. Please.Ē

    He responded by telling Nancy that heíd ordered potassium and wanted a blood draw next week. He wrote to me that he still feels Jim needs to be in the hospital, but deferred to me about bringing him in.

    Okay, conditions: a direct admit, no ER; determining the cause of the edema and dehydration and treating that cause, not just the symptoms; no surprise discharges and plenty of time to get home and nursing set up before discharge. If he comes in, itís for a diagnosis. Letís get to the root of the problem and fix it. Itís like putting a bandaid on a broken leg otherwise.

    Jimís temp did elevate to 101.6, but came down with Tylenol and removal of his blankets and heating pad. And water, tea, and Gatorade. Still waiting for a pee after his 20 mg of Lasix. We may have to give the other 20 mg if he doesnít pee soon.

    I made Simple Mills chocolate chip cookies today. They are delish! That made him smile.

    More than anything, I would love for Jimís problem to dissipate. But thatís not going to happen if they treat him exactly as they did last week. Iím praying a lot about this. A LOT.

    Thank you all so much for your love, prayers, and constant support. 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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  13. #57
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    Rose, I don't know if Hospice is the same in all states or not. Here, it has changed dramatically from when my husband was sick. They came into the home (if you wanted them) to help in anyway they could back then. Now if you sign up with Hospice, you are no longer accepted in the hospital, but have to go to what they call a Hospice Home. This is true no matter how bad off you are. Also, after a certain period of time you have to enter the Hospice Home whether you want to or not for at least 5 days. I asked my friend, who's sons had signed her up, what that was for and she said to give the caregivers that came to your home a rest.

    My friend died in Hospice. She had told me that when she got home that she would tell me everything I needed to know about Hospice, but she didn't come home.

    Hospice use to be highly regarded in this area, but now it has gone from non-profit to profit making and it is not at all the same. When my husband was so sick, he needed to be hospitalized much of the time. Unlike Jim he was unable to eat. He had had 60% of his stomach removed, but also his cancer was extremely aggressive once they operated on him. He had to have a second surgery due to infection of both lobes of the liver from the first surgery. Then he was left with a fissure that was draining and was very caustic if he tried to eat. So it was a much different scenario. Jim is still able to eat and is not that debilitated.

    If you do talk to Hospice make sure you can still take him to the hospital if he needs to go. Here if you have signed up with Hospice the hospital will neither admit you or treat you. I hope for the sake of everyone in California that needs them that it is not that way.

    Good luck with all your decisions. You are doing so good.

    God Bless you both,
    Virginia
    Virginia

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  15. #58
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    nuthatch (Joan) ~

    Thank you so much for your prayers.

    We know from giving Jon Lasix that Jim needs a potassium “chaser.” But the hospital doc, who discharged him, overlooked that. He also prescribed a BP med, which Jim doesn’t need, since his BP is low already.

    Dr. K corrected that today, after receiving my emails and talking to Nancy. Jim has a script for 20 mg potassium daily. Interestingly, Jim’s potassium level yesterday was normal. And magnesium. And sodium.

    I grew up on Tang. However, my mom also bought frozen orange juice occasionally. Nothing but fresh squeezed orange juice from luscious local orange groves for Jim and me now. We buy them by the case and give them to guests (Nancy, John, etc.).

    I’ve reduced Jim’s Lasix by half, and it worked just as well as the full 40 mg. I’ll be happy to have potassium for him now, because I fear what you experienced happening to him. I’m so very sorry you had to go through all of that.

    I didn’t get a chance to post about your poppies, by the way. Gorgeous! Your area is beautiful too. I’m so glad you live in a peaceful, serene place.

    Donna and funnylegs4 ~

    That’s correct, funnylegs4. Hospice means comfort care without intervention. Jim still wants to try to have radiation treatment on his tumor. He’s not ready to give up yet, and with the improvements in his blood work, if we can get this current issue resolved, he could still get it done.

    I mentioned hospice to Nancy today, and she said, “Well, they don’t hang IVs or do anything related to treatment.”

    DR. K AND CARE

    Dr. K called leaving a message in response to my email from yesterday, in which I described Jim’s return to normalcy at the end of the afternoon. Dr. K said, “His labs are good, actually, but I’m concerned about the recurrent fevers and fluid retention. He should be in the hospital, so we can manage this for him.”

    Okay. April 17 at 9 p.m., I took Jim to ER for this very reason. At 4:30 a.m. April 18, Jim was in his bed in the cancer unit. On April 19, at 1:00 p.m. Jim was discharged. Told to go home. That’s about 40 hours in the hospital, less than 2 days.

    They temporarily remedied his situation, but they didn’t solve his problem. They didn’t provide an explanation or prevention program so it wouldn't recur, which it has. So, how is this time going to be different?

    We go in for less than 2 days, come out, same thing happens? The point of this is … what?

    Sub Acute Care

    Then, Dr. K said, after having read my list of 10 things wrong with the facility, starting with putting in an IV without washing your hands or wearing gloves, “After he’s discharged, he should go back to the sub acute care facility for a little while, so we can keep track of him. Maybe you just NEED TO GET TO KNOW THE STAFF THERE.” (my emphasis)

    I can’t count the number of hospitals, doctors, nurses, therapists, specialists, technicians, you name it, I have met in 50 years with my boys. I can suss out a place, before I step through the door, and it only takes me a few seconds to recognize incompetence, neglect, danger, harm, and lack of supervision.

    Jim was only there for a few hours, and I already had a list of 10 serious infractions.

    So, I emailed my reply, which Jim read and agreed with, to Dr. K. I reiterated the two top complaints, and I asked him, “Would you put your loved one in this place?”

    I also said, “We never put our sons in a facility. Jim doesn’t want that either. So, we have to work out a plan for home care. Please.”

    He responded by telling Nancy that he’d ordered potassium and wanted a blood draw next week. He wrote to me that he still feels Jim needs to be in the hospital, but deferred to me about bringing him in.

    Okay, conditions: a direct admit, no ER; determining the cause of the edema and dehydration and treating that cause, not just the symptoms; no surprise discharges and plenty of time to get home and nursing set up before discharge. If he comes in, it’s for a diagnosis. Let’s get to the root of the problem and fix it. It’s like putting a bandaid on a broken leg otherwise.

    Jim’s temp did elevate to 101.6, but came down with Tylenol and removal of his blankets and heating pad. And water, tea, and Gatorade. Still waiting for a pee after his 20 mg of Lasix. We may have to give the other 20 mg if he doesn’t pee soon.

    I made Simple Mills chocolate chip cookies today. They are delish! That made him smile.

    More than anything, I would love for Jim’s problem to dissipate. But that’s not going to happen if they treat him exactly as they did last week. I’m praying a lot about this. A LOT.

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

    Love & Light,



    Rose
    Hi Rose,
    I hope what I said about Hospice was helpful. I try to do my homework on these things in case the worse happens to me or my family and I do not want to be discriminated against myself based on a false assumption that my disability already means I’m “suffering”. Not even giving IVs in Hospice sounds like torture. That’s literally dehydrating someone to death(if they don’t drink by mouth of course) and I wouldn’t want to die that way! My relatives were given small amounts of food and IVs/saline as they were dying for comfort as that was only fair to them. I know some people who are in the active process of dying refuse food or can't tolerate it, that is different. I’m so glad Jim feels he wants to try radiation again since even though he has had these hardships he is not actively dying, not by a long shot. Jim has a LOT of life in him. Hold onto that hope. I totally get that Dr K wants Jim to be monitored for his safety but the facility is definitely the wrong place for monitoring. As for the ER sometimes when you go to an ER you get a new doctor the next time who may catch a part of the problem that the last ER doctor did not catch so it can have benefits at times. Use your instincts of course. My continued prayers during your grief and tons of prayers for Jim to feel better.
    Last edited by funnylegs4; 04-25-2019 at 07:58 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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  17. #59
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    Good for you, Rose!!!!!!!!!!! You have EXACTLY the right approach and you are RIGHT about everything. Your objectives and strategy are so sensible and so... right for you and Jim. Also based on experience. From time to time over the years, we have had substandard care and I have reported it. Every time it has been addressed and the nursing supervisors where Nick lives have treated us like equal members of the team "We can do better" they have said. We are so lucky. I think what bothered me most about what you're dealing with right now is that you don't have a PARTNER in care who is available all the time to at least call - you need to talk to someone who knows you both, knows medicine and to whom you can ask, "What do you think?" I understand this need SO WELL - I have wanted that type of support so many times when I was home alone with Nick and he was in dire straits with any number of mysterious symptoms. We had that kind of support in the UK when Nick was on palliative care. Our palliative care doctor (or after hours whomever was on call) called me back within 20 minutes every single time. The support we had at home was amazing. I wish this for you. They even offered home treatments for comfort like massage and reflexology. A social worker visited to talk to Nicholas about his hopes and dreams. She was great! We got that service because Nick lived at home with complex care needs and his main issue is/was pain. In cancer care, they should have the same home support for families! To be either/or hospital (with help) or home (no help) is just insane. There should AT LEAST be someone to call who won't say "Go to the ER" when you need to talk things over and decide what treatment to pursue at any given moment. Why doesn't anyone else understand this????? I know Dr. K is a good doctor who cares about you but I think he is working within systems that are rigid. One size does not fit all. You want a partner in home care - perhaps there is no billing code for this or no one to actually make home visits (Nancy can't be on call when you need her all the time, but there should be a service that is). I hope and pray that you get what you need, Rose!!!!!!! xoxoxox
    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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  19. #60
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default One Minute At A Time

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

    Jim didnít pee for 12 hours last night.

    He slept soundly, and I hated to wake him up. Occasionally, he would come to enough to take a swig of water.

    Meanwhile, I sat in the chair next to his bed, watching him sleep, counting his respirations, because that was the only thing I could check without disturbing him. I prayed. I cried. I thought about taking him to the hospital. I prayed and prayed and prayed and prayed and cried and cried and cried.

    At 2 a.m., he finally woke up and had two significant pees. We changed his briefs, and I made him tea and a jam sandwich. Gave him a breathing treatment. Vitals were very good. He wanted to go back to sleep, and I needed to go to bed.

    When I got up at 7, he told me that heíd taken himself to the bathroom, without calling up to me, for a BM. And another pee.

    SAME OLE SAME OLE

    Jimís temp gradually rose to 101.6 today, and I followed the same protocol as I have the other 6 days this has been happening. His temp is normal, and after his Lasix this afternoon, his pee is voluminous. He does have a potassium supplement now, which I picked up at the drive-thru pharmacy this morning.

    I thought a lot today about taking Jim to the hospital with a direct admit and demanding that they solve his problem. I have to get Dr. K to admit Jim directly. I want to go in the daytime, not at night, and end up leaving at dawn. Jim will go by ambulance, but I will be driving, so that is a consideration.

    I decided to wait until Nancyís visit to discuss this with her. She said there isnít much that can be done about Jimís distended belly besides draining fluid as was done in the hospital. But that can be an outpatient visit. The problem is that it is temporary. Heíll continue to retain fluids after itís done, as he is now.

    She also shared her conversation with Dr. K yesterday. After she mentioned the IV insertion debacle at the facility to Dr. K, she said he gasped and exclaimed, ďOh no!Ē Like it was the first time heíd heard it, when Iíve sent 3 different emails to him telling him about it!

    Jim was significantly better this afternoon, and his vitals were all excellent. Nancy said she didnít hear anything in his lungs that was different than before. Diminished sounds, but no rales.

    At this point, Iím on a wait and see watch. Iím prepared to take Jim to the hospital at any time, but Iím very concerned that they will do the same thing they did last week: get him out of crisis and send him home to me, without any guidance on how to care for him.

    TOMORROW

    After Jimís Lasix explosion, he had leaked all over his bed, his wedge, etc. I gave him a quick bath as he was standing, and I placed underpads over all of the wet areas.

    Then, I said to Jim that he has to get out of bed and stay in Jonís recliner tomorrow, while I strip his bed and wash his mattress topper. I have clean sheets ready to go, but the topper is thick and will take time.

    ďYouíll get the same care over there that youíre getting here. And it will probably be good for you to be upright and sitting for awhile. I will be as quick as I can, but it takes time for the topper to dry. We have to do this. You canít stay in a bed full of pee.Ē

    Jim agreed and said he would be fine in Jonís recliner. Iím praying this will be so, because I must change his bed and wash everything. I cannot leave him in that bed.

    As for Jonís bed as an option, I havenít had time to clean his bed, and that will be a challenge, because I canít put his mattress cover in our washer.

    I can barely stand to go into Jonís room, and to do all that needs to be done to ready it for Jim is simply overwhelming to consider.

    My other concern is that Jonís bed, even when lowered to the floor, is still too high off of the ground for Jim to safely manage getting out by himself and walking to the bathroom. Itís a shorter distance, but with more obstacles.

    If Jim has one of his ďdelusional spells,Ē and he tries to get out of the bed, when Iím not with him, a serious accident will occur. He might be more comfortable on Jonís mattress, and maybe we can find a way to put it on his futon. But heís safer on the futon than in the hospital bed, I think.

    Iím just trying to weigh all of the pros and cons of both options. Itís not that easy to do.

    Another glitch is finding a way for me to sleep downstairs, because Jim doesnít call up to me for help after I go to bed. He doesnít want to wake me, because he knows Iím exhausted. But I canít risk him falling and needing me. I have to be accessible.

    There is no place for another bed. Jonís recliner causes me hip pain, if Iím in it too long. I donít know how to solve this problem.

    Flying by the seat of my pants. As per usual. Iíll figure it out, as per usual. Somehow, someway.

    I endeavor to be strong to the end. I pray for Divine Intervention and Guidance.

    We thank you all for your love, prayers, and continuing friendship. We pray for you and your loved ones and give thanks for the blessing you are in our lives.

    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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