Page 48 of 49 FirstFirst ... 183843444546474849 LastLast
Results 471 to 480 of 489

Thread: Jim's Journey

  1. #471
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,632
    Blog Entries
    1

    Thumbs up Be Strong

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

    How is everyone faring in isolation? What are you doing to keep yourselves occupied, distracted, and less stressed?

    On YouTube, Global Citizen is sponsoring Together At Home, with musical artists performing from their homes. I watched John Legend the other day. He and his wife, Chrissy, entertained for about an hour.

    Late Night TV hosts are also on YouTube with mini monologues from their homes, including Jimmy Fallon, Stephen Colbert, Jimmy Kimmel, Conan O'Brien, and Trevor Noah. The Jimmys also include their children and wives.

    Amazon Prime has many Oscar nominated movies available to rent or buy. Yesterday, while Jim slept all afternoon, I watched "A Beautiful Day In the Neighborhood," with Tom Hanks as Fred Rogers. I wept through some of it, recalling that Jonathan and Michael watched Mr. Rogers' Neighborhood everyday, as well as Sesame Street. Both programs began about the time they were born.

    In the mid 70s, I was invited to participate in a retreat with Mr. Rogers' staff and a group of professionals, including teachers of special education, nurses, a physician, a psychologist, and therapists. The purpose of the retreat was to discuss ways in which Mr. Rogers could incorporate children with various disabilities into his program. I was the only parent of children with disabilities on the team, as the other invited parent was in ICU with her child that weekend.

    This was a tremendous honor to be among this group of experts laying the foundation for Mr. Rogers to promote inclusion and love for all children. By Sunday, we were all friends. Then Mr. Rogers (he asked us to call him Fred) appeared to share our last meal with us. He spoke with us prior to the meal, and then he circulated throughout the group, addressing each person individually by name and thanking them for their participation and the work they did for children.

    I just watched him in awe, and then he approached me. He asked me questions about Jonathan and Michael, about how I was coping and staying strong, and he told me that several of the guests had praised me for my input. He told me to "keep doing everything you're doing." At the end of our conversation, he wrote our names in a little notebook and told me that he would pray for us.

    That was a turning point in my life. He empowered me to be an advocate and an activist for all persons with disabling conditions. He gave me confidence and strength. When I looked into his eyes, because he never stopped looking into mine, I saw his beautiful, gentle, loving soul.

    Tom Hanks' performance is truly remarkable. He captured Fred's softness and kindness. The story is fact-based, and everything I knew and felt about Fred is conveyed in it.

    Fred Rogers devoted his life to equality, peace, and love. During this pandemic, we need Fred Rogers. And this film is the closest we will get to having him here.

    JIM'S UPDATE

    Dr. K left a message this morning that: a) Jim has a UTI; b) he prescribed Augmenten; c) Jim's hemoglobin is 6.8, down from 8.2. Pre-transfusion it was 7.2.

    He said that if Jim has any bleeding, he will need to go to the hospital for another transfusion. Meanwhile, he ordered another blood draw for this Friday.

    The rest of Jim's blood work is adequate, with some slight fluctuations. His WBC is 5.8, down from 6.? a month ago, but still higher than it was for the last 2 years.

    So, I went over all of this with Jim, and he does not want to go to the hospital. "If I have to go, then we'll go. But I do not want to go. I do not want to deal with this or be in a place where I can get this virus and die a horrible death."

    How can I argue with that? This is the fear that everyone has, but it is exacerbated, when you are as fragile as Jim is and still fighting to get stronger.

    He's finally acknowledged that he's overdone it with sugar. He put in his dentures and asked for an egg and two slices of toast. He ate all but the crusts.

    He's eating oat milk yogurt, which has sugar, but it will also work for him with the antibiotic.

    His belly was reduced significantly after his most recent BM, but now he's blown up with gas. Hence, the teeth. He's also been using straws again, which we must stop.

    John texted this morning to check in. He asked if he could stop by to pick up a couple of cases of water for his family. Of course! But I told him that we would have to steer clear of him since he is still working and out in the public. He said that he understood completely. Of course, if we have an urgent need for his help, he will don a mask, gown and gloves and help us.

    We are down to our last egg, as my Instacart shopper yesterday said, "no eggs at all." But, he was able to find almost everything else, and he kindly left them at the front door. He's shopped for me before, so he knows our situation. He's a sweetie.

    So, I asked John if he could pick up a dozen organic eggs for us. "No problem," is his answer always. So, he did and left them on top of the stacks of cases of water.

    He is worried about Jim and texted that he's available to help us anytime.

    Please join us in prayer that Jim's hemoglobin will re-calibrate (a term used with regard to Jonathan by several physicians), and he will not need a transfusion. While the nurses in the unit were so wonderful, it's just such an ordeal for Jim to move or be moved now, on a gurney, transferred, waiting, etc., plus, well, you know, THE VIRUS.

    This is a time, when they should allow qualified nurses to do transfusions at home. I don't know how that could be done logistically, because a blood draw is needed first, and the results are necessary for the transfusion. Nancy does IVIg infusions in the home setting, as well as TPN, setting up saline and antibiotic IVs for home use. She was an infusion nurse years ago. She could give Jim a blood transfusion. But it's not permitted by law.

    Thank you all for your love, prayers, support, and continuing friendship on our journey. We love you, and we pray for you and your loved ones everyday.

    These are difficult times for us all. But we're still here, and we're still together. We can support each other through this. We're never alone.

    Healing, positive energy around the World!

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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.

  2. The following 7 users say "thanks"


  3. #472
    Distinguished Community Member jingle's Avatar
    Join Date
    Oct 2006
    Posts
    426

    Default

    Much love and many prayers

  4. The following 5 users say "thanks"


  5. #473
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    North Carolina
    Posts
    6,071

    Default

    Rose, I am really sorry that Jim has a UTI and has to go on an antibiotic and also that he is close to needing a blood transfusion. I totally understand about not wanting to go in a hospital at this time, but that is the law, as you said.

    When I had surgery one time I had to have blood after it and a Nurse set by my bed through both bags. It was during flu season and blood of my type was running low so it was late at night before they gave me the first blood. She was still sitting by my side at 10:30 or 11:00 when I drifted off to sleep. We were watching a movie that was really good, but I couldn't keep my eyes open.

    I will pray that Jim's blood draw this week is better. I always pray for the two of you each night. It will be more specific right now.
    Virginia

  6. The following 4 users say "thanks"


  7. #474
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,816
    Blog Entries
    32

    Default

    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))))))* ~

    How is everyone faring in isolation? What are you doing to keep yourselves occupied, distracted, and less stressed?

    On YouTube, Global Citizen is sponsoring Together At Home, with musical artists performing from their homes. I watched John Legend the other day. He and his wife, Chrissy, entertained for about an hour.

    Late Night TV hosts are also on YouTube with mini monologues from their homes, including Jimmy Fallon, Stephen Colbert, Jimmy Kimmel, Conan O'Brien, and Trevor Noah. The Jimmys also include their children and wives.

    Amazon Prime has many Oscar nominated movies available to rent or buy. Yesterday, while Jim slept all afternoon, I watched "A Beautiful Day In the Neighborhood," with Tom Hanks as Fred Rogers. I wept through some of it, recalling that Jonathan and Michael watched Mr. Rogers' Neighborhood everyday, as well as Sesame Street. Both programs began about the time they were born.

    In the mid 70s, I was invited to participate in a retreat with Mr. Rogers' staff and a group of professionals, including teachers of special education, nurses, a physician, a psychologist, and therapists. The purpose of the retreat was to discuss ways in which Mr. Rogers could incorporate children with various disabilities into his program. I was the only parent of children with disabilities on the team, as the other invited parent was in ICU with her child that weekend.

    This was a tremendous honor to be among this group of experts laying the foundation for Mr. Rogers to promote inclusion and love for all children. By Sunday, we were all friends. Then Mr. Rogers (he asked us to call him Fred) appeared to share our last meal with us. He spoke with us prior to the meal, and then he circulated throughout the group, addressing each person individually by name and thanking them for their participation and the work they did for children.

    I just watched him in awe, and then he approached me. He asked me questions about Jonathan and Michael, about how I was coping and staying strong, and he told me that several of the guests had praised me for my input. He told me to "keep doing everything you're doing." At the end of our conversation, he wrote our names in a little notebook and told me that he would pray for us.

    That was a turning point in my life. He empowered me to be an advocate and an activist for all persons with disabling conditions. He gave me confidence and strength. When I looked into his eyes, because he never stopped looking into mine, I saw his beautiful, gentle, loving soul.

    Tom Hanks' performance is truly remarkable. He captured Fred's softness and kindness. The story is fact-based, and everything I knew and felt about Fred is conveyed in it.

    Fred Rogers devoted his life to equality, peace, and love. During this pandemic, we need Fred Rogers. And this film is the closest we will get to having him here.

    JIM'S UPDATE

    Dr. K left a message this morning that: a) Jim has a UTI; b) he prescribed Augmenten; c) Jim's hemoglobin is 6.8, down from 8.2. Pre-transfusion it was 7.2.

    He said that if Jim has any bleeding, he will need to go to the hospital for another transfusion. Meanwhile, he ordered another blood draw for this Friday.

    The rest of Jim's blood work is adequate, with some slight fluctuations. His WBC is 5.8, down from 6.? a month ago, but still higher than it was for the last 2 years.

    So, I went over all of this with Jim, and he does not want to go to the hospital. "If I have to go, then we'll go. But I do not want to go. I do not want to deal with this or be in a place where I can get this virus and die a horrible death."

    How can I argue with that? This is the fear that everyone has, but it is exacerbated, when you are as fragile as Jim is and still fighting to get stronger.

    He's finally acknowledged that he's overdone it with sugar. He put in his dentures and asked for an egg and two slices of toast. He ate all but the crusts.

    He's eating oat milk yogurt, which has sugar, but it will also work for him with the antibiotic.

    His belly was reduced significantly after his most recent BM, but now he's blown up with gas. Hence, the teeth. He's also been using straws again, which we must stop.

    John texted this morning to check in. He asked if he could stop by to pick up a couple of cases of water for his family. Of course! But I told him that we would have to steer clear of him since he is still working and out in the public. He said that he understood completely. Of course, if we have an urgent need for his help, he will don a mask, gown and gloves and help us.

    We are down to our last egg, as my Instacart shopper yesterday said, "no eggs at all." But, he was able to find almost everything else, and he kindly left them at the front door. He's shopped for me before, so he knows our situation. He's a sweetie.

    So, I asked John if he could pick up a dozen organic eggs for us. "No problem," is his answer always. So, he did and left them on top of the stacks of cases of water.

    He is worried about Jim and texted that he's available to help us anytime.

    Please join us in prayer that Jim's hemoglobin will re-calibrate (a term used with regard to Jonathan by several physicians), and he will not need a transfusion. While the nurses in the unit were so wonderful, it's just such an ordeal for Jim to move or be moved now, on a gurney, transferred, waiting, etc., plus, well, you know, THE VIRUS.

    This is a time, when they should allow qualified nurses to do transfusions at home. I don't know how that could be done logistically, because a blood draw is needed first, and the results are necessary for the transfusion. Nancy does IVIg infusions in the home setting, as well as TPN, setting up saline and antibiotic IVs for home use. She was an infusion nurse years ago. She could give Jim a blood transfusion. But it's not permitted by law.

    Thank you all for your love, prayers, support, and continuing friendship on our journey. We love you, and we pray for you and your loved ones everyday.

    These are difficult times for us all. But we're still here, and we're still together. We can support each other through this. We're never alone.

    Healing, positive energy around the World!

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Hi Rose,

    I ABSOLUTELY ADORED “A Beautiful Day In The Neighborhood” when I saw it in theaters! Fred Rogers has the compassion and patience I wish I had! Watching the film brought back so many memories of the TV show for me. I saw on youtube that the real Fred Rogers adored disabled children and deeply befriended disabled fans of the show. He had 2 disabled children as guests on “Mr Rogers Neighborhood” which was a really groundbreaking show that discussed a wide range of topics from electric cars to grief. SO THRILLED YOU MET HIM! How Blessed you are! Tom Hanks nailed his mannerisms. Doing well in isolation except I’m finding I can come across as a horrible jerk on digital modes of communication as opposed to in person. Oy! I disgust myself.

    I imagine Jim’s body wants the fast energy from sugar but the tumor will feed on the sugar unfortunately. Avoid the hospital where possible to protect yourself and make room for virus victims.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  8. The following 5 users say "thanks"


  9. #475
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,632
    Blog Entries
    1

    Default

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

    funnylegs4 ~

    I'm so glad that you enjoyed the movie. Initially, although I love Tom Hanks, who is a superb actor, I wondered whether he could become Fred. Did he ever!

    The purpose of Fred's retreat was to learn ways to teach non-disabled children about children with disabilities, as well as include children with disabilities on the show. He was a champion of inclusion for everyone. In 1969, his episode featuring an encounter with the show's black mailman, was controversial, as Fred invited the mailman to cool his feet in a wading pool with Fred.

    Screen Shot 2020-03-24 at 4.17.13 PM.jpg

    Indeed that weekend retreat and meeting Fred were true blessings for me. He set me on a course, which allowed me to be strong and to fight for the rights of people with disabilities. I treasure the moments I spent with him.

    ABOUT THE HOSPITAL

    Believe me, we do not want to go to the hospital! Or anywhere, but especially not to the hospital. However, I don't think that we will be interfering with care for other patients, regardless of why they are there, for a blood transfusion. We go to an outpatient unit, restricted to patients, who need infusions or transfusions. There wouldn't be any C-virus patients in that unit. Any patient in the unit absolutely needs the procedure they are receiving. For Jim, a blood transfusion will save his life.

    I'm sure that Dr. K only wants to send Jim to the unit, if he doesn't re-calibrate by Friday, when Nancy will do another blood draw. After all, Dr. K cancelled Jim's appointment, which would have been yesterday.

    Based upon data collected from a paltry number of test kits, the current number of C-virus patients is 125 in our county. That number doubled from the previous report. In California, with a population of 40 million, there are 2,200 tested cases of C-virus. Clearly, there are more people carrying it than that number, but we don't know who they are or how many of them there are, because we don't have testing kits.

    I am always nervous about going to any medical facility, as you all know, prior to this pandemic. I've been protecting our family from the flu for 50 years. Amazingly, Jonathan and Michael never got the flu, even when they were in school.

    After a dear friend visited and stayed with us for Christmas, and got the flu the day she left, we have had a restriction on anyone, who flies, visiting us unless they've been here for a week or, better yet, 2 weeks.

    As Jim was transporting our friend to/from the airport, he got the flu. I moved Jon and Michael downstairs (at the time, their bedroom was upstairs; it is now our office). Jim was isolated in our bedroom upstairs, and I served him food on a TV tray I left in the hall in front of the bedroom door. He opened the door, got his food, ate, then put it back on the tray, while I was downstairs. We didn't have masks then, so I wore one of Jon's bandanas around my nose and mouth as well as gloves.

    Miraculously after 10 days, Jim emerged and neither the boys nor I got the flu.

    Jonathan was in ICU during the Swine Flu, and H1N1. We were often in the hospital with Michael or Jon during flu season, Christmas, Valentine's Day, name a holiday, we were in the hospital.

    This isn't our first rodeo.

    On Friday, Nancy will bring us a couple of bottles of hand sanitizer, which will be easier to use than alcohol wipes. We have plenty of BioMasks, which we will wear. And gloves. Our ambulance service is immaculate with the best EMTs I've ever met in 50 years, hands down. We know that they thoroughly scrub their rigs after each transport, and I'm sure that they have even amped that up since the C-virus.

    All of that being said, the main reason we don't want to go is that Jim is just so fragile. Even for his drainage in February, he still could bear weight and help himself on and off of the gurney/bed. Now, he can't.

    However, a blood transfusion could turn it all around for him, boost him enough to fight off the UTIs and help him to eat better. He wants that, but there are times, when he feels ready to "fold" (poker term ~ he watches poker on TV ~ not my favorite choice of his TV viewing).

    On Friday, we will have a good conversation with Nancy about all of this, and she will guide us in our choices.

    TODAY

    This morning, Jim was so discombobulated in the bed, I couldn't believe it. He was laying diagonally, with one foot resting on the bottom rung of his overbed tray, and the other with his knee bent on the bed.

    "What are you doing Jim?!"

    "I don't know. I just woke up, and I was like this."

    That was a challenge for both of us to get him straightened out and up in the bed, change his britches, and begin the day. But we succeeded!

    He ate a reasonably sized bowl of cereal with a few raisins, prunes, and 1/2 a tub of last night's leftover peaches. Then he took Augmenten.

    He fell asleep and woke up with gas and a sour taste in his mouth. After he rested, we successfully got him up in the bed and changed. He finally asked for a cup of tea, drank half of it and went to sleep.

    Originally, I planned to make his favorite garlic roasted red potatoes, and whatever else appealed to him as a dinner meal, but with the gas and sour taste, I decided that wasn't the best idea. We have lovely large organic russet potatoes, so I suggested I bake one, we share it, and he can have butter and cheese on it. At this point, he said it sounded like a better idea.

    He is disappointed that the Augmenten took away his anticipation of the garlic roasted potatoes. So many things, which he enjoys eating are being farther out of his range of what his gut can tolerate. Our dearest friend is going through this same issue right now, for other reasons, so she knows what this is like. It sucks. Plain and simple.

    He's wearing his dentures and not using a straw, but his belly blew up with gas today. I don't know how much he can eat, or if he'll even want to eat, when he wakes up.

    Thank you, funnylegs4, and all of our friends here, who are praying for us, loving us, and walking beside us. We love you and pray for you and your loved ones always.

    Be strong. Be safe. Be well.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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.

  10. The following 6 users say "thanks"


  11. #476
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,632
    Blog Entries
    1

    Exclamation Choices, Decisions, Fears, Infections, Leaks

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

    Nancy texted today that Dr. K wants Jimís blood draw tomorrow rather than on Friday. If the hemoglobin level is the same, he will likely want Jim to go to the hospital for a blood transfusion on Friday, if they have availability to squeeze him in. Otherwise, it will be Monday or Tuesday.

    A couple of nights ago, Jim asked me to unplug the small Lakersí lamp on Jonís chest next to the closet. I had to pull the chairbed away from the wall and awkwardly bend down to unplug it. My right hip was not happy about that action, so Iíve had considerable pain since then.

    I have been applying heat and Aspercreme, which does help slightly. I havenít been able to take my walk due to weather and needing to be here for Jim, which usually loosens me up a little. So, I was planning to clean and prepare for Nancy tomorrow. Tomorrow became today.

    Jim was nauseated today 2 hours after taking Augmenten. He woke up feeling queazy. He vomited a very small amount of the soup heíd eaten prior to taking it. Most of it was mucous. This has been the issue previously, when heís vomited. So, I think we need to step up his breathing treatments again. He also slides down in the bed, so he isnít upright, when heís sleeping.

    For 2 1/2 hours, I alternated between tending to Jim and Swiffering, vacuuming, and scrubbing. A breathing treatment did help him in the end.

    PLUMBING PROBLEMS

    Because we donít have enough things going at once, we have plumbing problems.

    There is the long standing mold under our kitchen sink from a dripping faucet. Itís dried now, because our plumber told me to let the faucet hang down into the sink, until we can have the mold removed. I just keep the doors closed. I moved our under the sink trash out. Now we have a huge stainless steel bin in Michaelís and Jonís room (they share it now, of course), along with the recycle bin. Supplies, and boxes and bags of food are in the room too. Our home is just a clutter box.

    New problems:

    Our upstairs toilet is leaking in Jonís walk-in bedroom closet. Maybe 20 years ago, Jim put two boards over that space in the ceiling to prevent leaks after he installed a new toilet. It has worked until now. Our toilets are only a couple of years old, and our trusted plumbers installed both on the same day. Dad and son team.

    Another potential mold problem there.

    Also our ancient upstairs bathroom Ö itís just awful. We started remodeling, and then everything came to a halt, when Jonís health began declining in 2004. Weíd make some attempts, and then 2009 happened, and we were basically running an ICU for Jonathan until he passed last year.

    In November 2016, when Jim was coughing up blood, he replaced the bathtub downspout. Our plumbing fixes are very difficult, because of the cheap way our homes were built. Like us, almost every one of our neighbors has had a slab leak, which is like living in a horror film for months.

    We have hard water, so everything corrodes, and now the downspout wonít work. I have it permanently in the up position, so that I can take showers. I cannot push it down, and if I could, Iíd be afraid that I couldnít pull it up again for showering.

    So, now, the shower head is leaking, plop, plop, plop, plop. Itís a good thing that I sleep downstairs now, because that would drive me around the pole every night.

    I finally told Jim about the shower (he knew about the toilet leak) this evening. Jim said, ďWe have to call the plumbers. We canít let water be leaking and building up.Ē

    We canít do it tomorrow or Friday.

    Plus Jonís closet is stuffed to the brim literally, and I would have to remove all of that for the plumbers to access the ceiling. Jim thinks weíll be okay, if we gown, mask and glove John to help me. And we wear masks when the plumbers are working. How are they going to be able to do this, when Jim sleeps during the morning and afternoon? I donít know.

    I began crying, trying hard not to give in to it. Jim invited me to climb up on the bed with him, which is lovely, but very impractical in several ways. We hugged, and he assured me, ďEverything will be all right, honey. Weíll find a way."

    JIM, THINKING OF ME

    Today, Jim offered that I should not accompany him to the hospital, if he needs a transfusion. He said that there was no need for both of us to be exposed, if COVID-19 or the flu or any other germ is around.

    I explained to him that if he gets COVID-19, I will get it too, because I am providing him with 24 hour care. We donít have enough masks or gowns to protect me from him. Like him, Iím in the high risk group, and I have RA, am rundown, exhausted, stressed, and grieving. If I get it, I probably wonít survive either.

    It hurts so much for me to say this, but it is a fact. Iím not in great shape, and if I get COVID-19, my odds are not at all good.

    So, I said, ďJim, where you go, I go. I donít want you to be alone. I can protect us. You wonít think about washing your hands or not touching your face. I can be there to do that for you. Iíll make sure that your mask is over your nose, as it often falls down. I will be there to reduce the risks as much as I can for both of us. I love you for thinking of me. But weíre in this together regardless of whether I am there with you or at home worrying about you. I will be there with you.Ē

    It feels like I canít pray hard enough for Jimís hemoglobin to rise out of the danger zone. Or that we donít get COVID-19. I understand that Jimís journey is precarious, as does Jim. But, I have to survive to get all of our affairs in order, otherwise the state will have everything. I cannot allow that to happen. Unfortunately, life keeps throwing obstacles in the way of my ability to prevent it from happening.

    So, there we are. Choices, decisions, fears, infections, leaks.

    Thankfully, Jim is feeling much better tonight, albeit afraid to eat. I contend that itís his lungs getting filled up, not his belly, that is the issue with his nausea and retching. I know that was the case with Jonathan, and this is like a mirror image of him now.

    We love you, and we pray for you and your loved ones every day. May you be safe from this virus, strong and well.

    Abundant Blessings Upon All ~

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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.

  12. The following 5 users say "thanks"


  13. #477
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,632
    Blog Entries
    1

    Default Count Your Blessings

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

    Grab a beverage, a snack, and anything else you might need to get you through this long post!

    Jim was miserable last night, feeling defeated and depressed. The Augmenten has really messed up his appetite, with nausea and a bad taste in his mouth. He has obviously lost more weight, which he can not afford to do.

    So, we skipped last night’s Augmenten, and it’s an Augmenten-free day today.

    NO TO A TRANSFUSION

    He told me that he doesn’t want a blood transfusion, regardless of the test results. He is afraid of getting COVID-19 and infecting me. I assured him that I support any choice he makes and that I understand as well as I can, without being him.

    Hospital Environment/Risk

    When Nancy arrived, we discussed the hospital situation. She told us that everyone is greeted at the outside entry with a nurse taking their temperature. EVERYONE has to have a normal temp to be allowed in the hospital (except ER, I would guess). A procedure gown (paper) is also provided to everyone to prevent germs spreading from clothing.

    She didn’t mention whether they give out masks, which I doubt, although the hospital had masks in the radiation oncology unit, as well as hand sanitizer, when Jim had his radiation treatments last Fall. But now, masks are so scarce for medical personnel, I don’t think they can give them out to the public.

    She takes lab work to the hospital, and before she can enter, she has her temp taken and is given a gown. She runs in, drops of lab work, runs out.

    I asked what she thinks the risk is for us to go in for a blood transfusion. She said she really didn’t know. But she did say that another hospital, in vicinity to her home, has 5 COVID-19 patients. For the size of our metropolis, that is a very small number. But as we have seen, it can expand rapidly.

    "I’m Ready"

    Jim told Nancy that he doesn’t want to go in. “I’m dying anyway. I don’t Rose to be exposed. I worry about her. And she needs to be here to get things sorted out with the house and our will. I told her I would go alone, but she insists on coming with me.”

    I explained to Nancy that if Jim goes alone, and he is exposed to COVID -19, he will definitely transmit it to me. So, I might as well be there with him to protect him.

    Jim said, “I don’t want it. I’m done. I’m ready to go. I can’t do anything anymore. I’m weak. I’m ready.”

    Nancy gently, caressed Jim’s shoulder, “That’s okay, Jim. Whatever you want and decide to do, that’s how it will be. No pressure. You’re the boss.”

    THE DRAW

    Nancy suggested a peripheral draw from Jim’s hand, since the draw last Friday was difficult from the port. Plus she has to waste 5 cc of blood from the port, but not from a peripheral draw.

    Jim agreed. But he’s dehydrated and malnourished, and where he has incredible accessible veins, she was unable to draw anything. And it was very painful for Jim, even though Nancy is so gentle and the best IV/port/peripheral nurse ever. I was holding his other hand and watching him as she wiggled the needle a bit, and I said, “Nancy, he’s in a lot of pain here.” She stopped.

    So, she drew from the port. No resistance today, and the blood flowed out like a river. “This is great!” she exclaimed. “And look at that blood. Very nice.” She explained that as soon as she saw Jim’s blood last Friday, she knew that he was anemic. Not surprised at all by his low hemoglobin. And the difficulty of the draw then was “low volume.”

    She told us that about 10 years ago, the insurance companies refused to pay for a home health nurse to do blood transfusions. It was a 2 day visit. First day, draw blood for type and cross match. Second day give blood. Nurse sits there for 6 hours. It was too expensive. Prior to that, Nancy gave many blood transfusions to home patients.

    Okay. The ambulance to take Jim to/from the hospital is $1,600 each way. I haven’t received the Medicare breakdown of the cost of the hospital, the Clinical Outpatient Unit, the nurses, the blood draw, the blood, etc. But I can’t imagine it would be less than a home health nurse.

    POST DRAW

    Nancy chatted with me in the living room about Jim “declining” and that she would provide me with a booklet to help me understand it better. I told her that I had read the book, when sitting beside Michael, as he was dying. So, I know that dehydration is more comfortable than too many fluids.

    Yet, she gave Jim 4 extra saline flushes today in his port to boost his hydration.

    I walked out to get our mail, as she was loading up her car.

    She had mentioned Canadian butter tarts, which she is making, when she’s in isolation. Flour, butter and salt for the crust, filling is butter, a bit of brown sugar, and raisins. She gave me two tarts for Jim to try. He did, and he loved it!

    A BM and 40 cc of Saline

    It had been 5 days since Jim’s last BM, but he sure made up for it this evening! First formed and solid, followed by what we call “soft serve.” It went on and on for an hour. We ended up having to change his bed, because I just couldn’t control the output fast enough. That’s fine. He needed a linen change anyway.

    As this was going on, he told me that once it was over, he wanted a bowl of cereal with raisins and coconut milk and an Orgain shake. He ate about half the cereal, and he’s drinking the shake with purpose.

    He’s in a great mood now, laughing, joking, and feeling so much better. Right now, he’s reading the Wine Folly book I bought for him months ago, which is probably the last time he looked at it.

    I told him that I think that 40 cc of Saline boosted him. Jim replied, “That sounds like a song title.”

    I paused, then I broke into song: “Before 40 cc of saline, I wasn’t feeling right. But after 40 cc of saline, I’m feeling great tonight! Cause I had 40 cc of saline …” Then, he chuckled and said that was enough.

    In just a few hours, we went from grim to grin.

    No word on blood draw results, so I’m praying that means that the lab didn’t find anything alarming as they did with the last draw.

    We are hopeful, because his blood draw went well, and his blood looks healthy, and he feels so much better this evening.

    Jim told me to text Nancy and tell her to get to work on making more tarts. I’m sure that she would be happy to do so for Jim.

    NANCY’S COVID-19 SCHEDULE

    Nancy is a Senior, so she’s in the high risk group. She now has 3 patients only to serve, which is Jim and two other young men, who she’s been caring for through many years. They are family to her, and she will not leave any of us stranded, even with the C-virus looming.

    She told me today that she feels safe coming to our home, because “this is the most sterile home I have ever visited! You never go anywhere to pick up anything. And you wipe down every thing. Gloves, masks, gowns, you’ve got it all here. You’ve been doing this long before this pandemic.”

    That is because I recognize the flu as a potential threat to us. We don’t take the flu vaccine, so we have to isolate. It isn’t fun, of course, to be isolated from others. We miss John terribly, for example. But we have to do this, and John knows full well that we do. He misses us too.

    We’ll have to figure out how to use the iPad so we can FaceTime or whatever it is called with John and our other friends. That would probably be good for all of us for many reasons.

    COUNT YOUR BLESSINGS

    Probably more than you wanted to know, but this day was impressive to us. We know that every day we reassess what awaits, and today, we’re enjoying the boost of a BM and 40 cc of saline.

    Count your blessings, for they are many, and be grateful for each moment of every day. I watch the sun rise and set, and often Jim joins me. Through our windows we have a lovely view of the sky, trees, clouds. The morning sun breaks on the back of our home, and the sun sets on the front, casting a glorious array of hues on our trees, roof tops and the sky.

    Let your heart fill with peace and love for all humans, creatures, and the Earth. Let positive, hopeful energy keep you strong. Then share that energy and send it into the Universe.

    Find ways to help others, even in the smallest way. Anything we do for each other makes us all feel better.

    If you’re holding onto something painful, try to let it go. Search for forgiveness, because that heals you. It helps the person you forgive, but it’s healing for you.

    We are all isolated now by COVID-19, so it’s a perfect time for reflection and spiritual growth.

    Take good care of yourself, inside and out. Eat well, take your vitamins, get rest, exercise, get out in the fresh air everyday.

    We love you and pray for you and your loved ones, and we give thanks for the blessing you are in our lives.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Last edited by Earth Mother 2 Angels; 03-27-2020 at 07:36 AM.
    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.

  14. The following 5 users say "thanks"


  15. #478
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,632
    Blog Entries
    1

    Smile "No Transfusion Necessary"

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

    Blood work results are in!

    Jimís Hemoglobin rose from 6.8 to 8.0!!!!

    Dr. Kís note: ďBlood counts are better. No transfusion necessary.Ē

    Other results are also significantly improved:

    WBC: 6.9 up from 5.6

    RBC: 3.2 up from 2.7

    Hematocrit: 25.4 from 21.8

    Platelets: 172 from 141

    So, Iím in tears and praising God for answering our prayers. Thank you all so very much for your prayers and positive energy on our behalf.

    Such a blessing and a tremendous relief for us.

    Jim is sleeping right now, and I am so anxious to tell him this good news. I know that he will be delighted and grateful.

    We send you our love, prayers and gratitude.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    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.

  16. The following 5 users say "thanks"


  17. #479
    Distinguished Community Member Jeanie Z's Avatar
    Join Date
    Dec 2006
    Location
    WPB,FL
    Posts
    1,898
    Blog Entries
    1

    Smile

    :) Yay! Our prayers are working. Love, Jeanie :)

  18. The following 2 users say "thanks"


  19. #480
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    9,837
    Blog Entries
    15

    Default

    Congratulations and bravo!!!!
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

  20. The following 3 users say "thanks"


Page 48 of 49 FirstFirst ... 183843444546474849 LastLast

Similar Threads

  1. Starting this Journey
    By mom2hunter in forum Child Neurology
    Replies: 2
    Last Post: 04-27-2017, 06:57 AM
  2. Who Else Has Questions About Their Health and Spiritual Journey?
    By NeuroNixed Craig in forum Multiple Sclerosis
    Replies: 28
    Last Post: 08-29-2012, 01:16 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.