Page 11 of 11 FirstFirst ... 67891011
Results 101 to 109 of 109

Thread: Jim's Journey

  1. #101
    Distinguished Community Member SuzE-Q's Avatar
    Join Date
    Nov 2006
    Posts
    1,931

    Default

    I hope the infusion goes well, Rose.

    Interesting that it's not permitted for home healthcare to do.

    Hugs to you and Jim, it will probably be an emotional time if hospital staff express their grief when they learn about the loss of Jonathan.

    Funny that the phrase: " the i word" has another annoying connotation now, too.
    Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.

    Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

  2. The following 2 users say "thanks"


  3. #102
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    North Carolina
    Posts
    5,526

    Default

    Let us know when Rose, but only if you have "extra" time. Regardless there are those of us who will be praying for this to restore energy and better health to Jim and thereby more peace for you.
    Virginia

  4. The following 2 users say "thanks"


  5. #103
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    3,851

    Default

    Rose, my thoughts are with you both and I’ve said a prayer.

    ANN
    There comes a time when silence is betrayal.- MLK

  6. The following 2 users say "thanks"


  7. #104
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,289
    Blog Entries
    1

    Default

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

    SuzE-Q, Virginia, and ANN ~

    Thank you so much for your prayers and thinking of us.

    IRON INFUSIONS

    The infusion center called, and Jim's infusions are on: Thursday at 11:00 a.m., Friday at 2:15 p.m.

    Later Nancy called, while she was working today. Bless her! Turns out that she can do an iron infusion at home, however, Medicare will not pay for it. She thought Jim's Part B might cover it. But, I reminded her that we have to pay privately for all of Jim's port supplies, when she draws his blood. Neither Medicare nor Part B are willing to support home health care for Jim.

    I remember in 2011, when John's dad was ill, and his mom wanted to bring him home from an acute care facility. Home health was not covered by Medicare, and one of his medications cost $4,000.

    This MUST change!!!

    The other hitch is that Nancy only works on Tuesdays and Thursdays, although she often makes exceptions for her special patients, or for patients, who require infusions or port draws. As I said, she is the BEST nurse in that agency, and she should be retired now, but she loves her patients too much, and she said, "My job," to quit.

    I recall, after Jim was diagnosed, sobbing on Nancy's shoulder, "You're going to retire soon, what am I going to do for Jonathan and Jim without you?"

    She patted my back, "It's all right, honey. I'm not going anywhere. I'll be here for you."

    That is LOVE and dedication.

    She has a life of her own, husband, daughters, grandchild, and she's booked with her family's needs for the next two days. Friday, she'll have too many patients to do a 2 hour infusion.

    I told her that it was fine that we're going to the infusion center. Jim said today that he's actually looking forward to seeing the new infusion center, which we think has a view of the mountains, where in the hospital, the infusion center is in the basement. Most of all, he wants to see all of the great nurses, who he loves, and who love him. They ask to take care of Jim, and I guess the senior nurse always wins. Ironically, her last name is the same as ours. I tease Jim about his second wife. I hope I get to meet her.

    Jim and I will be taking an assortment of photos of Jonathan and Michael to show the nurses. I can feel the reaction just thinking about it now. "So beautiful! So sweet! Look at those eyes! Awww ..."

    It will be an interesting experience for all of us. And, I will be beside my love, supporting him, comforting him, making sure everything is going well for him, and the nurses will witness the depth of our love and devotion.

    THE iPAD

    John delivered it ready to go this afternoon, and he gave us a refresher course, and watched us and taught us, as we used it. I have left Jim with it, and it will be interesting to find out how well it went. He hasn't called up to me, so he may have given up.

    He said to us, "You know, my brain isn't what it used to be, and I have trouble retaining things. But I want to do this, and I'm going to try."

    John replied, "I'm just a text or phone call or 1 1/2 miles away, Jim."

    I replied, "And, I live here."



    PREPARATIONS

    Jim has an assortment of comfortable pants and button down shirts for the adventures awaiting him. I have a lot of ironing to do. But I have all day tomorrow to do it.

    I've also washed all of my "going out in the world" clothes. Again, ironing.

    Tomorrow, I will cut Jim's hair, which he really needs. He's up to date on his other grooming, except shaving. He's been using the electric razor I got him, which is fine, but not as smooth a shave as a razor. He needs to look dashing for his infusion nurses.

    John agreed.

    I wish that I'd had time to bring John's niece over to our home to cut/style my hair. The last time she cut my hair was October 2018. My hair hasn't been this long since the 80s. My go-to style now is a pony tail in a scrunchee. So age-appropriate! I'm all thumbs with my hair, otherwise, I'd make a bun and put a pencil through it.

    TRANSPORTATION

    John is onboard to take us to Jim's infusion on Thursday. He was going to take us on Friday, but he and his wife have tickets to a concert, and this is a late afternoon appointment.

    I said that I'm able to drive the van both days, but John insisted that he wanted to take us on Thursday, so he could help us, and we could get the lay of land. The infusion center is new, and Jim has never been there. I am usually so stressed by the time we get there that it's just a maze to me.

    The valets know Jim and love him. I know they will give us lots of support on Friday, unless the staff has changed, which is likely. One great thing about our hospital is the commitment to treating everyone with kindness, respect and caring. From valet to cafeteria attendant to housekeeping right up to the top level. It's rare to find anyone, who isn't nice and helpful.

    So, tomorrow, I iron. Ironic. More "i" words, all related to Jim's current problem.

    Thank you all so very much for standing beside us, loving, praying for and supporting us. Please always know how much we love you, pray for you and your families, 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.

  8. The following 3 users say "thanks"


  9. #105
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,289
    Blog Entries
    1

    Default Police on Patrol Everywhere Today

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

    Jim slept late this morning, after not sleeping well last night. I wanted to leave around 10:30 to run errands, including picking up Jim's meds at the drive thru pharmacy. He woke up about 10:45, and I was out by 11:00.

    When I drove into the back access to the drive thru, two police cars came around the corner of the back parking lot behind the store. Although I've seen a fire truck and firefighters shopping inside the grocery store many times, I've never seen police cars. So, I thought, "this is not a good thing."

    I drove up to the drive thru window only to see a sign: "Come on in! Our microphone is broken."

    That was a hard pass. I was out of there. If there are police cars in the back, then, well, no, I'm not going in. Plus, I am trying to avoid standing in line around sick people. Fortunately, Jim has plenty of steroids, and he isn't going to take Nexium. I'll go back Saturday morning, when there is less traffic. It's only 3 miles from our house.

    Driving to my next destination, I saw a police car waiting at the corner of a small park, where speed is monitored. I don't need that monitor, because I always slow down in residential areas. I drive a giant truck. As I neared the monitor, it went off, because my speed was slow.

    The police car pulled out behind a car behind me. My heart fluttered. I did nothing wrong. But I have PTSD about being pulled over by police.

    Once it was when Michael was seizing in the back seat, and I was a mile from our home. The officer said I was speeding, and I explained about Michael's seizure. He shined his flashlight on Michael. He said, "You know he has seizures, so you should know what to do." Yeah, get him home. He wrote me a ticket.

    I've been in the middle of high speed car chases on the freeway, where I was stopped by police. In one, I was on my way to a doctor's appointment for myself for a change, and the police had cornered the suspects on the street across from the medical center. I was in the left hand turn lane, my blinker on, I had the green left turn arrow, and I looked at the officer directing traffic and motioned to him for permission to turn. He waved me on. Two seconds later, sirens blazing, I was pulled over. Five Cops, with their hands on their weapons, surrounded my van, while they ran a search on my plates.

    When I asked the officer why I was pulled over, he ordered, "Be quiet, ma'am. Stay in the vehicle and don't say anything."

    Of course, I was cleared, and the officer told me that my van looked like one used in a robbery. At this point, I was shaking uncontrollably, and I knew to keep my mouth shut. I wanted to say, "Really? I'm a middle-aged woman driving a wheelchair van with a ramp. Criminals aren't that clever. You watch too many movies."

    Thankfully, today's officer pulled over the car behind me, and I drove on to my destination.

    Before I left, Jim said, "Watch out for the crazies."

    "Don't ever say that again, honey! You said that the last time, and I witnessed three near accidents, two of which could have involved me with speeding cars."

    Jim fell asleep after I got home, so I had a late start on the day and all that I wanted to accomplish before tomorrow's infusion.

    I did cut Jim's hair this afternoon, and he's had his shower and shave. He's ready to go. I didn't get to the ironing. I'll likely skip my walk and do that first thing when I get up, because I'm tired and my back is screaming "No more standing up!"

    Also, I was able to wash all of my "going out in the world" jeans. So, I have a set wardrobe for whatever may come our way.

    Speaking of hair, I tried something new with mine today, which as I mentioned is quite long now. I let it dry naturally for an hour, then I blew it dry underneath for a minute. It looked like I had a perm! I also decided I needed some bangs, so I sliced off a bit at the top.

    When Jim saw me, he said, "You look lovely, honey! Your hair looks very nice, and it makes you look younger."

    If I haven't given you enough reasons why I love Jim, here's another one.

    Jim plugged in the iPad to recharge, first in the TV, and I said, "No, I think it has to go into a socket with the adapter." Turns out that was true, and he did that this morning. He put the iPad in the case I ordered, and it turns out we can make it into a stand to hold up the iPad. He's also thoroughly examined the stylus.

    Last night, I found the Dodgers' game on YouTube on the iPad, and we watched a few innings, before Jim became weary.

    I'm grateful that John will be transporting us tomorrow. I am going to need his help. On Friday, the appointment is late afternoon, so I'll have more time to prepare. I'm ready to drive and do what needs to be done for Jim.

    I just hope there aren't any police cars when we get there!

    We send you all of our love and prayers and thank you for your love, prayers and support.

    Stay tuned for the next installment of our saga!

    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.

  10. The following 3 users say "thanks"


  11. #106
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,289
    Blog Entries
    1

    Thumbs up

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

    Jim’s infusion went very smoothly today.

    The medical center has wheelchairs, which are just basic frames with wheels and no seat belt, lined up outside the building, like carts at a grocery store. The valet brought one to John’s car for Jim, so he didn’t have to walk at all.

    John pushed Jim (chairs can’t be self-propelled), then left us to go back to his job, once we arrived at the infusion center.

    While we waited in the lobby for 20 minutes, Jim was recognized by a variety of people, nurses, lab techs, a radiology tech, a pharmacy rep. Everyone smiled broadly and said, “I haven’t seen you in a long time!”

    The nurse with our last name spotted us and came out to the lobby. Jim introduced me, and I extended my hand, “I’m his other wife, Rose.”

    We told her that I was there, because Jonathan had passed, and she was crestfallen. “I’m so very sorry. Oh dear. He was your everything. My heart breaks for you.”

    I realized when we left that we hadn’t shown anyone Jonathan’s picture. We will do that at tomorrow’s infusion.

    Jim’s nurse today is a sweet, young woman with a lovely smile and personality. She explained that Jim wouldn’t likely have any adverse effects or reactions, as it is unusual, and the iron he was being given was very mild in a small dose.

    The infusion lasted about 1 1/2 hours, so we were finished by about 1:30. I texted John, he arrived promptly after we rolled outside.

    ENTERTAINMENT

    We set up camp, with the iPad on the over-the-chair tray. Jim played his favorite card game, and I chimed in occasionally.

    Meanwhile, I deleted photos from our phone, because I’d run out of space and wanted to take a photo of Jim. So many photos of Jonathan, all of which I kept, of course, and shared with Jim.

    At one point, I showed Jim a photo and asked, “Do you want to keep this photo of your Shingles?”

    We also met a therapy dog, who was making the rounds! A cute 20 pound terrier mix in a baby buggy, wearing a Hawaiian straw hat with colorful feathers and paper flowers. Cody looked at me as if to say, “Please, help me get rid of this hat!”

    I told Cody that he looked ready to go to Hawaii, and asked, “Can we go too?”

    His eyes said, “Lady, you can have anything you want, if you get this hat off of me.”

    His owner said, “Let’s all go to Hawaii!”

    Jim, his nurse, another nurse, and I all said, “I’m in!”

    Cody’s owner gave us a squirt of Purell, wished us well and traveled on to the next patient.

    AMBIENCE

    The infusion center is huge, airy, well laid out. Windows on one side look out on the boulevard below, and probably to the distance of the foothills and mountains. But the blinds were closed, as some patients were sleeping.

    Everything was super clean. An elderly gentleman in scrubs was wiping down all of the chairs, equipment, etc. between patients. He was putting fresh pillow cases on, cleaning up any debris. I just watched him in amazement. He has to be older than Jim and me.

    Smiles for miles from everyone, including other patients. The majority of the patients were women, middle aged to Seniors. I was pleased to see their husbands beside most of them. Others had a friend or relative, but some were alone.

    Then, I thought about all of the times Jim was there alone. My heart broke a little.

    The last patient near the exit, a woman, with her husband beside her. I was pushing Jim’s chair, and Jim and I turned and smiled at them, as they smiled back.

    “How is it going for you today?” I asked.

    The woman said, “Good. Thanks. And you?”

    “Good,” Jim answered.

    Then, it was all our thumbs up for each other. “Take care,” I said as we left.

    Then, we encountered a new patient, a Senior woman, and Jim’s nurse was taking her back to Jim’s chair. When I said, “Oh, we just left there!”, the lady asked me, “Did you leave it nice and warm?”

    “It’s toasty warm. And, the nurse for that chair is wonderful.” I winked at Jim’s nurse.

    BACK HOME

    Jim is fine. He’s quite tired, naturally, because he didn’t get his morning nap, and this was stressful, even if he had. He had a brief nap, then it was a run to the bathroom, which continues all day and night from Lasix.

    We had soup and sandwich for lunch, so he’s eaten and can relax.

    Jim’s nurse said today that it can take a week to two weeks to feel the boost from the iron, although given via IV, that time is usually less than more.

    So, now we pray that it works.

    John asked me whether I feel okay about taking Jim tomorrow, and I do. As long as Jim is able to climb into and out of our van, we should be all right. We have a valet service, and the valets love Jim. I’m perfectly able to push the wheelchair.

    John and his wife are going to a Rob Thomas concert tomorrow night. I wouldn’t want them to miss that! I wish that Jim and I could go with them.

    Up to the minute, that’s all the news. Thank you for your prayers, love, and continuing support. We love you and pray for you and your loved ones every day.

    Blessings upon you all ~

    Love & Light,



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

  12. The following 4 users say "thanks"


  13. #107
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    North Carolina
    Posts
    5,526

    Default

    Will pray that tomorrow goes just as today did. I hate that you have to take him alone, but now that you know the ropes you should be fine.

    Nice going today.
    Virginia

  14. The following 2 users say "thanks"


  15. #108
    Distinguished Community Member SuzE-Q's Avatar
    Join Date
    Nov 2006
    Posts
    1,931

    Default

    Sounds like the whole environment there and your experience exceeded any assumptions and expectations!

    I hope you'll think about giving positive feedback, it's important for the heads to know that they are maintaining such good standards in so many important ways.

    You sound a lot handier with a pair of hair scissors than I am!
    Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.

    Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

  16. The following 2 users say "thanks"


  17. #109
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,289
    Blog Entries
    1

    Default Iron Infusion Day 2

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

    Thank you Virginia and SuzE-Q ~

    I will definitely give positive feedback praising the infusion center. When things are bad, I complain, and when theyíre good, I commend.

    Jim napped in the morning, which he needed.

    I was fine with driving, but Jim felt the need to instruct me on how to drive the 4 miles to the medical center. I have lived here for most of my life, and Iíve driven the road to the hospital hundreds of times.

    We arrived on time, and the valets quickly brought Jim a wheelchair, helped him and me out of the van, and saw us to the door of the building. Very nice folks.

    Jim was taken in within a few minutes after our arrival, with a new nurse, who hadnít taken care of him before. Very sweet, kind and caring.

    Jim set up the iPad, and we watched YouTube videos of babies with dogs. So adorable! The love the dogs have for these babies is wonderful. Why this, you might ask? Well, we love dogs and babies. We miss our dog, and we wish that we had grandchildren.

    Then, Jim started playing his card game, and I texted our very dear friend.

    In between that, we visited with Jimís nurse and the nurse, who has our last name. We showed them the photo of Jon, and their reactions were as expected. Jimís nurse, with teary eyes, said, ďOh, he is beautiful! You can see the Light in him. So sweet. And you two took care of him and his brother by yourselves? Just amazing.Ē

    The time seemed to move quickly. Only one patient out of 25 was left in the center, when Jimís infusion finished.

    Jim napped then had some dinner. During dinner, he experienced a nose bleed. From my quick on line research, a nosebleed correlates more to low iron and anemia than with an iron infusion. Jim says that he feels okay.

    Iron infusions can cause a lower blood pressure, and today, Jimís BP was 105/68. About the same as yesterday. Of course, anemia and low WBC/RBC can cause a lower BP. So, he has all of that going on.

    Tomorrow, I will pick up Jimís meds, and Iím going to start him on Zantac, instead of Nexium, since many of the sites Iíve visited indicate that gastric distress correlates to low iron and anemia. If, as Dr. K suggested, Jim has sub-clinical gastric distress, we need to get on it.

    I am praying for a peaceful night, and that Jim isnít up all night going to the bathroom, because he took his Lasix late (as he did yesterday).

    Thank you all for your positive energy, prayers, good thoughts, and love. We return all of that to you tenfold.

    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.

Page 11 of 11 FirstFirst ... 67891011

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.