Page 5 of 10 FirstFirst 12345678910 LastLast
Results 41 to 50 of 97

Thread: A Prayer Request For Jim

  1. #41
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    311

    Default

    Thanks for taking the time to update us Rose. Sounds like you have a great team working with you and Jim. That's what it takes.

    Jerry and I eat a WFPB diet. No meat, fish, oil, dairy, processed foods, eggs. More grains, breads, avocados, nuts seeds and pastas will put weight on. I have to watch the consumption of all of those of the weight goes up.

    Happy Birthday to Jim. Prayers for a complete recovery.
    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."

  2. #42
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,053
    Blog Entries
    12

    Default

    It sounds as if everything that can be done is being done--and I hope that the nurse practitioner will turn out to be less busy this time!

    Since you mentioned eggs and cottage cheese, Jim must eat dairy. Milk shakes will really add weight fast. As Tamie mentioned, avocados are very high in calories. Bananas too--and potatoes. He should definitely be able to gain weight without having to eat meat or poultry.

    It must be good to know that Jim has a medical team who are putting him in the driver's seat and working together to find solutions that will work for him--and for you and Jon.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  3. #43
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,878
    Blog Entries
    1

    Default

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

    funnylegs4, Tamie, and agate ~

    Thank you for your prayers, birthday wishes, and nutrition suggestions.

    Jim probably shouldn't eat nuts and seeds, as we've now discovered through this testing that he has diverticulitus. That might explain some of the discomfort he experiences after meals. He eats a lot of bread, usually with several grains and seeds. If he has any digestive issues, he shies away from them. He loves potatoes. And guacamole. Right now, it's difficult to find decent avocados, because it's the off season. Jon's nurse has a mature avocado tree in her yard, which produces giant delicious avocados. But it's dormant for a couple more months.

    Jim is a big egg eater. He is having them nearly everyday now. I hope that won't bring up his cholesterol, which is perfect (because we're vegetarians). As for pasta, he only likes thin pasta ~ not a fan of lasagna or macaroni.

    He actually gained 5 lbs last year, then lost them, when he started coughing up blood in September.

    THE BRAIN MRI EXPERIENCE

    Today's brain MRI didn't take as much time as we'd expected. However the tech messed up inserting the IV, and Jim said it was quite painful, burning and stinging. Jim has very prominent veins (from scaffolding work years ago), so there is no excuse for screwing up an IV on him. He's had several IVs for his recent tests, no problem, smooth as silk. But this tech said "Your vein rolled."

    Jim said, "It has to collapse before it can roll. And it hasn't. I'm well hydrated. I have great veins."

    So another tech was called in, and he wasn't happy about having to put the IV in the other arm. When the tech finished, he threw Jim's arm up on his chest and walked away. That is uncharacteristic of our hospital's staff.

    This really upset me when Jim told me about this, because if I had been with him, I would have taken these techs aside and told them, "This man you're testing today is my beloved husband, whom I adore. He's just been diagnosed with lung cancer. He is having this MRI to make sure that it hasn't spread to his brain. He's 69 years old, and he's afraid. I'm afraid. We're all afraid. So maybe, just maybe you could show him some compassion and tenderness. That's what this hospital is noted for, and my husband needs you both to live up to the spiritual commitment of this hospital to its patients. Dignity, compassion, kindness, and complete care."

    And those two guys would have returned to Jim and apologized to him. I guarantee it.

    You don't come in for a brain MRI, unless there is a possibility that you have a neurological condition affecting your brain, or cancer has invaded it. Really. This was inexcusable.

    And, when you have a catastrophic illness, like cancer, you have a right to get angry, when you are mistreated by medical professionals. It's all about CARE, and that was so evident in the hospital's Cancer Center, where we met the oncologist. Everyone in that Center does everything that they can do to keep their patients alive and comfortable, while they are battling cancer. They know what their patients are enduring, and they demonstrate that understanding with every word and gesture.

    In fact, the oncologist's nurse hugged me before we left. She promised me that she would help us through this crisis and be there for us in every way.

    So, now Jim's right arm (his good arm) is hurting. I put a Witch Hazel pad on it this afternoon to bring down the inflammation and prevent bruising. The last thing Jim needs right now is a blood clot from a botched IV insertion. Grrr ...

    We haven't received the results on the health portal yet. So we're a bit anxious.

    Oh and there's this: Everywhere Jim goes, to the hospital, the radiology center in the medical complex, the MRI, doctor's offices, etc., he has to fill out the very same form. Every single time! It's all in the computer. This is ridiculous. Make copies and spread them around. This is why he has to be 15 minutes early to every appointment. To answer the same questions!

    When we went to see the oncologist, I took the clipboard from Jim, "Let me fill it out, honey." Jim was so grateful.

    The admitting person for today's MRI asked Jim:

    Why are you here? Jim said, "I have cancer."

    Why do you need this MRI? Jim said, "To find out if the cancer has gone to my brain."

    Are you taking any medications? "No." The guy persisted, "Blood thinner?" "No." "Diabetes medication?" "No." Then the guy said, "So you've been pretty healthy." Jim replied, "Yes, until I got cancer."

    Isn't this stressful enough for Jim, without having to fill out the same form over and over and over and over, and answer the same questions, and be told that he's been healthy, and it's amazing at his age that he isn't on a dozen medications?

    What is the point of the computer systems between all of these entities?

    I'm sure that Jim will have to fill out the same form for the radiology oncologist and the surgeon. We have a copy of the form I filled out for the oncologist, and we're going to copy that and Jim will take it to every appointment from now on.

    JON UPDATE

    Long night last night. I got to bed at 4:30 a.m., and Jim woke me at 7:45, as he was preparing to leave for the MRI.

    Jon is having trouble holding his SATS, because he's too weak to cough on his own. He is so tired, so lethargic, so weary. He slept about 10 hours yesterday,after crashing from 44 sleepless hours. But he didn't really wake up until about 2 a.m.

    Lots of suctioning and repositioning, and trying to get him to cough on his own.

    He fell asleep at 9:30 this morning and woke up about 2:30, still groggy. His urine output is way down, because we took him off of his formula yesterday after he vomited. We supplemented with water flushes, but it probably wasn't sufficient. So this afternoon, we increased his food rate from 60 to 90, and increased his flushes.

    The good news is that his bowels are moving. That may be where the water/fluid is going now instead of to the bladder.

    It's been a struggle to keep his SATS up above 90, and they've dropped several times to 80-79. This is even more concerning, because he is now on 2.5 liters of O2. During a crisis like this (and there have been MANY), Jon usually starts to recover by now, and we start weaning off of O2.

    Of course, we're worried about aspiration, when he vomited. However, his temperature is normal, so he isn't showing that particular indicator of infection now. He's also not in distress. He is just exhausted.

    I think it's fair to say that all three of us are exhausted.

    We persevere. We hold on to hope and believe in the power of prayer and positive, healing energy.

    And we thank you for your love, support and prayers, and for sharing this path in our journey.



    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.

  4. The following 2 users say "thanks"


  5. #44
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,161
    Blog Entries
    14

    Default

    Hi Rose,
    You're welcome. I'm sorry Jim had staff that were less than caring. That was my experience when I had surgery unfortunately. They screwed up by blood test and were rude and insensitive. I pray it does not happen again. I also pray that Jon gets better very soon. Is there a way you can ask Jon if he feels stressed or worried? Can he communicate that?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  6. The following user says "thanks"


  7. #45
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,878
    Blog Entries
    1

    Thumbs up

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

    The Good News:

    Jimís cancer has not metastasized to his brain. The MRI revealed: NO EVIDENCE OF INTRACRANIAL
    METASTATIC DISEASE.

    We are tremendously relieved with this result, and we give abundant thanks to all of you for your prayers and support.

    Jonís nurse has advocated successfully for an aide to turn and lift Jon. An aide has been authorized for 9 visits. We are hoping that the authorization will be renewed indefinitely, because Jon is going to need this assistance for at least 6 months (the length of time the oncologist told us that Jim would be undergoing treatment). I suspect that Jimís recovery will take much longer.

    We will learn more from Jonís nurse on Tuesday, when she visits to change Jonís catheter. She suggested that the social worker, who assisted in getting the aide, would be able to help Jim with transportation to appointments, when needed. Specifically, chemo treatments, I suspect.

    Jon has recovered from a 3 day crisis, caused by fluid and gas build up from lymphedema and insomnia for 44 hours and 2 Ativan, which did nothing to help him sleep. He was on O2, (at one point up to 3 liters, which is a lot) with fluctuating SATS, and we suctioned numerous times every day. The first day, he gagged and vomited, which caused us to worry about aspiration.

    With Jimís diligence in suctioning and administering breathing treatments, Jon is now off of O2 and holding SATS in the mid 90s.

    Jim had a lull in eating, which has now picked up, and heís eating more frequently every day. Heís so fatigued, of course, and he wants to sleep or just rest for hours upon hours. But he realizes that without nutrition, his energy is even more sapped. So, heís stepping up to the plate, literally.

    Jim meets with his oncologist on Tuesday (I canít go, because Jonís having a cath change), to find out about the medical teamís treatment plan for him. We pray that the plan will be efficient, as brief as possible, and result in a cure.

    Please know that we appreciate your love, prayers, support, positive, healing energy more than we can convey. And please know also that you are all in our prayers, and that we are here to support 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.

  8. The following 3 users say "thanks"


  9. #46
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    791

    Default

    Rose, So excited to hear the good news that must have made you guys jump for joy! So glad that Jon is doing better and you'll have an aid to lift and turn Jon. I'll keep the healing positive prayers coming for your family! Thank you for all the updates You're in my daily thoughts and prayers.
    Mary Grace

  10. #47
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    311

    Default

    Rose, that is wonderful news! Continued prayers for all of you. Sure hope you are able to get some much needed help to take the strain and stress off you and Jim.
    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."

  11. #48
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,878
    Blog Entries
    1

    Default

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

    Mary Grace & Tamie ~

    Thank you so much for your prayers and positive, healing energy.

    We're just taking each day as it comes. Tomorrow is the Big Day ~ when Jim finds out the treatment plan.

    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.

  12. #49
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,053
    Blog Entries
    12

    Default

    What good news about Jim! I'm sure that it's a huge relief to you both, and now there's far more hope.

    I loved that part in your post about stepping up to the plate. Hope Jim will eat hearty and keep his strength up!
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  13. #50
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    791

    Default

    Rose, Sending good thoughts and prayers today as you get the treatment plan to move forward. I have always been a big believer that "it's all in the attitude" and you and Jim have a wonderful attitude. Its' not always easy to do.I know you're trying to keep Jim healthy and add some calories. does he like peanut butter or any nut butter? This is one of my all time favorite foods! I like it with bananas, chocolate rice cakes, english muffins crackers etc. I love it on waffles and pancakes and in oatmeal. Kathleen's favorite way is in oatmeal even with fruit added too. Just an idea...Honestly I can eat it straight out of the jar! Thank you for the updates. Thank you for including us on this jpurney with you...I just wish I could do more to help...
    Mary Grace

Page 5 of 10 FirstFirst 12345678910 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.