Page 2 of 10 FirstFirst 1234567 ... LastLast
Results 11 to 20 of 97

Thread: A Prayer Request For Jim

  1. #11
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Hi Rose!

    I just read your email and wanted to reply, but can't since we're at the hospital still. For some reason, I can receive but not send email when I am here. Well, I could send if I use the online portal from my internet provider but it is a big pain....so anyways! I wanted to write that I am thinking of you all and sending prayers for Jim's biopsy to go well with no complications!!! I hope everything goes smoothly with getting him there and definitely no collapsed lung! I know how hard that must be for you to not be able to go along. I am sure that feeds into the cleaning frenzy. I know I was crazy with cooking last week. Not sure why I fixated on that, but I pretty much won't have to cook at all the rest of January! We have 2 freezers so I had plenty of room to put all the food somewhere. I will put an update on Caitlin on a separate post on here.

    It is good to cry and let the stress go! I am like you and do not do it in front of anyone though. For me, the tears come when I am driving in my van. It works for me! Usually a song will come on and the tears start to flow.

    I will be sending positive energy & prayers your way today and will check back later for updates!

    Love & hugs!!!!!
    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  2. The following 2 users say "thanks"


  3. #12
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    792

    Default

    Rose, Praying today for the best possible outcome with Jim's biopsy. I'll be watching for an update whenever you get time. Sending warm hugs and positive thoughts too!
    Mary Grace

  4. The following 2 users say "thanks"


  5. #13

    Default

    Sending prayers up for Jim today.

  6. The following 2 users say "thanks"


  7. #14
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    313

    Default

    Praying for you and Jim today Rose. Update when you can.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  8. The following 2 users say "thanks"


  9. #15
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,173
    Blog Entries
    15

    Default

    Hi Rose,
    I have been thinking about you and Jim and praying for you all day. I pray there are absolutely no complications. As Lisa said, do not worry if you have to cry. I cry by myself or with someone I trust who won't judge the tears. It's sometimes the best way to release.

    I just read your email and wanted to reply, but can't since we're at the hospital still. For some reason, I can receive but not send email when I am here. Well, I could send if I use the online portal from my internet provider but it is a big pain....so anyways!
    Lisa, my friend had the same problem when she went to the hospital to have her baby. Some hospitals have free wifi hotspots you can send email from. You can ask someone who works there if your hospital has any.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  10. The following user says "thanks"


  11. #16
    Distinguished Community Member tic chick's Avatar
    Join Date
    Oct 2006
    Location
    Detroit, MI
    Posts
    692

    Default

    hey rose ,

    i hope things went as well as possible today.

    i saw your post yesterday and i'm sorry jim and your family are going through this tough time. i donated blood today at our church's blood drive and i said a prayer for jim in the church. i'll keep jim, you and jon in my prayers as i believe that people who are prayed for do better physically and emotionally.

    being a caregiver is not for sissies and i know you give your all for your family. remember your walks when you can and anything else that gives you time for yourself.

    thank you for sharing and caring,
    jeannie
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  12. The following user says "thanks"


  13. #17
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Hi!

    I do use the hospital wifi, it is free throughout the hospital, but I download my email on my laptop, not thru gmail or other online ones...somehow it knows I am not on my home provider when trying to send out emails. I do most of my communicating thru facebook now so it isn't a worry. I can even remember the days of going to the hospital before I had a laptop and having to go down the hall to a "community room" where there was one computer for many people to share! You could have 30 minutes at a time....I don't know how I survived that!!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  14. The following 2 users say "thanks"


  15. #18
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,909
    Blog Entries
    1

    Default

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

    I wrote this last night, but I didnít have a chance to edit it and post it. So I revised it a bit. Itís long, and itís the full story.

    Jim got home about 1 p.m. Our pulmo, Dr. H, called a little before 3 p.m. He had the preliminary results from Jimís biopsy. Here it is:

    Atypical cells present, highly suspicious for keratinizing squamous carcinoma

    Dr. H ordered a PET scan, which will be done at the same medical complex as his office (and where Jim had the CT scan initially).

    He also decided to refer Jim to an oncologist. He had been hesitating, because he thought we might wait until we get the PET scan results. We said, letís get it all going now. He agreed.

    Jim coughed up quite a bit of blood after he came home. First he laid down for a little while, and when he got up, he coughed and coughed, and more blood each time, until it finally subsided. We give thanks for this, because coughing up blood continuously would mean a trip to the ER. Via ambulance probably.

    Meds He Probably Doesn't Need

    Dr. H called in scripts for Z pack and Prednisone (corticosteroid). He said itís likely Jim also has bronchitis. We explained that after the first Z pack, Jimís coughing was reduced significantly. And for the past couple of weeks, he only coughs a few times a day, not with as much force or mucous, and a lot less blood than before. His coughing yesterday was a result of the biopsy, as was the blood. And amazingly, it stopped as soon as Dr. H called.

    But I picked up the meds anyway ~ on a Friday night at rush hour. Iím glad I only had to go a couple of miles. Lots of traffic. And I donít have great night vision.

    Jim doesnít want to take the Z pack or the steroids, since he knows (as do I) that the coughing and blood now are from the biopsy.

    We have lots of reasons for wanting to avoid the steroids, primarily the fact that it reduces the immune system, and Jim is going to be in a lot of germy places, and he doesnít need to get a cold or the flu. Dr. H admitted that he didnít know whether it would help Jim, but he thought it was worth a try. As long as Jim isnít coughing too much, I think itís better to hold off on the steroids.

    Special Treatment as the Early Bird Patient in Radiology

    Jim said that everyone at the hospital was absolutely wonderful to him. They even brought him breakfast (eggs, toast and coffee) and lunch (chicken Ö um Ö weíre vegetarians Ö so he had some carrots and an apple).

    He said the doctor is a very nice man, kind, explained everything thoroughly to Jim before the biopsy.

    I was trying not to have a nervous breakdown, waiting for the call for our friend to go pick up Jim. Eventually, I started cleaning the upstairs, as Jon was asleep. Finally, at noon, a lovely nurse, Nan, called to tell me Jim had one more x-ray to ensure he didnít have a pneumothorax. First one looked fine. His vitals were excellent, even had SATS of 95!

    Jim left without the discharge instructions, so Nan and I played phone tag for a couple of hours, while she tried to email them to me. Never came through. So right before Dr. H called, she said she would come to our home after work and put them in our mailbox. (And she did, God Bless Her.) Then she went through each item with me.

    She said, ďJim is such a nice man. We all really like him here.Ē

    So, I told her our story, and she was in tears. ďWhat a beautiful love story,Ē Nan said.

    The first time Nan called to tell me about Jimís last x-ray before being released, I asked her, through tears, if Jim was okay, and she told me he did so well and is very brave. I asked her to tell Jim that I love him very much. She said, ďAw, that is so sweet. I will.Ē

    Jim said, that when Nan gave him my message, she was tearing up. He said he told her, ďI know she does, and I love her very much too.Ē

    The Importance of Nutrition

    When I returned from picking up the meds, I asked Jim what he wanted to eat. He said, ďI could really go for some mashed potatoes.Ē

    So I whipped up those, some steamed carrots, his Quorn roast, and peas. He gobbled it up. That made me so happy, as his appetite tends to wane some days, and heís losing weight, which he canít afford, since heís already quite thin.

    Our Management Plan So Far

    Jim spent a lot of time with Jon in the afternoon and evening, watching comedy movies and laughing. We told Jon that Jim has an owie, so we have to be gentle with him. We told him that Jim had a test at the hospital. But heís okay now. Just sore. Jon doesnít have to know everything right now.

    Jim is worried about me, of course. I reminded him that for the better part of the last 2 years, I have been taking care of him and Jon, and Iím up to the task, obviously. I have ďwork arounds,Ē and I have been thinking a lot about what needs to be done in the future. There are lots of food delivery services these days, some with fresh veggies and fruit, some with entire meals ready to be made. Costco delivers our supplies now. Our bottled water is delivered. The pharmacy is only a couple of miles away. Along with a grocery store (which isnít organic-friendly, but it will do in a pinch), along with lots of other stores (which we never go to).

    When our friend, who we call our ďadopted sonĒ (heís Jonís age), brought Jim home, he told us that he had talked to his boss about Jim, and his boss said that as long as our friend meets his quota (which he had by 1 this afternoon), everything was cool. She understood. Our friend said, ďIf Jim needs to go somewhere every day, 5 days a week, I can do that. I will do that.Ē

    Jon is entitled to an RN for respite through Regional Center, so if I need help with him, while Iím at the hospital with Jim, that could be an option. We havenít had the best luck in the past with respite nurses, which is why we stopped them in 1997. But itís an option.

    We also have a friend, who is a retired nurse, and she would be free to stay with Jon and would love to do that. Iím talking about staying with him during that period of time when he doesnít need meds or formula put up, etc. Everything would be done for Jon, for a couple of hours, and someone could just be with him to make sure that heís safe and doesnít need anything. Watch movies with him. Keep him company. I can be home in 10 minutes from the hospital.

    The only concern is lifting Jon up in bed and turning him. I can lift him with the bottom sheet (not the best option due to sheering of the skin potential), but I canít turn him and clean him up. We have straps, which we might try to use, with Jonís lift. And thereís another option suggested by our former PT, who got us the straps, and I can contact him for more ideas. The nurse, who visited last year, when we were going through the straps and lifting sheets ordeal, could come out and show us how to use different lift options for Jon.

    Iím sure that there is a solution for everything, and somehow, someway, we will make it work, so that Jon is okay, Jim is okay, and I am okay.

    Last night at dinner, Jim said, ďIf you were dragging on your elbows, you would still lift Jon up in bed.Ē

    And I replied, ďYeah. So would you. And your point is?Ē

    Taking Care of the Caregiver

    It finally stopped raining, and I was back out on the trails walking again this morning. Iíve missed that exercise and time to pray and be with nature. I will resume that every day faithfully, as my regeneration, rejuvenation, inspiration, and healing balm. I donít go out on the slick sidewalks, because I canít risk falling, which Iíve done before. But as soon as the sun shines and the walkways are dry, Iím there.

    Iím keenly aware of how old I am, how my body works and feels, what I can and cannot do, and where my limits are. Right now, Iím working on adrenalin, because this is a crisis, and thatís how we roll. And look at me! Iím driving again (in the rain no less and traffic to boot), and shopping, and all that stuff that I havenít done in many years! And itís fine. I can do this.

    As I told Nan on the phone today, ďJim is the love of my life. He is The One.Ē

    And 25 years ago, we vowed to love, honor and cherish each other for the rest of our days. And so we are. And so we will.



    Thank you all so much for your LOVE, your PRAYERS, your unfailing support of our family. We know you love us, we feel it, and we are comforted and reassured. Thank you for being with us on this path in our journey. Thank you for your positive healing energy, and every thought you raise up to God on our behalf. We are so grateful for you.

    Love & Light,

    Rose
    Mom to Jon, 47, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  16. The following 3 users say "thanks"


  17. #19
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,173
    Blog Entries
    15

    Default

    Rose,
    Thank you so so much for your update! I'm so glad that the medical staff were so good to Jim and that there was no complications from the biopsy. I'm also thrilled to hear how your friends have come forward to help!!! It is often during these crisis moments that we see the greatest acts of human kindness. I think what you told Jon is perfect for now. I also think you are smart to hold back on the medications. Sometimes the medications can make people feel worse. Not better. I know you will find a way to care for both Jon and Jim no matter what happens. If I hear of anything that could help you lift Jon I will let you know. I will continue to pray that the mass is not cancerous and that you and your family will have everything you need. Tell me if you need anything that I could help with?

    Lisa, Oh! I see! I thought the email was online. Glad you can at least access the internet. :)
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  18. The following user says "thanks"


  19. #20
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    313

    Default

    Thanks for the update Rose. Glad Jim came through the test OK and you received the results so quickly. Nothing is harder than waiting. Sure wish we lived closer. I would love to spend time with all of you and help you out. We lost respite care last year cause we weren't using it enough and because we just didn't trust the nurses with Tyler. Sometimes it is just easier to care give by yourself. Good to know they will be available if you need them for Jon.

    It's nice when the weather cooperates and you can get out of the house for some alone time. You need it to regroup and refresh your spirit. Take care of yourself.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  20. The following user says "thanks"


Page 2 of 10 FirstFirst 1234567 ... LastLast

Similar Threads

  1. OT Prayer need
    By satman next generation in forum Epilepsy
    Replies: 18
    Last Post: 01-14-2015, 03:39 PM
  2. Prayer Circle for Julia
    By tic chick in forum Emotional Support
    Replies: 19
    Last Post: 09-06-2013, 09:38 AM
  3. Prayer Request for Jon: Bleeding
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 24
    Last Post: 10-04-2012, 04:20 PM
  4. Prayer Requests for Jon
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 11
    Last Post: 07-07-2012, 06:31 PM
  5. PRAYER'S needed for missing man!!!
    By Buttons2 in forum Emotional Support
    Replies: 37
    Last Post: 05-10-2012, 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.