Page 4 of 4 FirstFirst 1234
Results 31 to 38 of 38

Thread: CN Central: September Updates

  1. #31
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,217
    Blog Entries
    18

    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)))))) ~

    Thank you for your prayers!

    ((((((funnylegs4)))))) ~

    I'm glad that you've worked out the issues with your friend, and you're right to separate yourself from the "jerk." We don't need toxic relationships. I will pray that your transportation issues will be resolved easily so that you don't have to worry about attending the special event. And, I apologize to the gal who didn't inform you of the change in your appointment, as I went on a tirade about ineptitude. However, someone was inept in not telling her, so that she knew to inform you. So my point stands.

    The more channels of communication that information has to travel through, the greater the chances are that someone will screw up. Murphy's Law.

    Be well, happy, and strong!

    ((((((Mary Grace)))))) ~

    One summer, years ago, when my dear friend Liz (Pansy), visited, it was 112 degrees here. I took her on a very short walk to see the golf course, and I was gasping. She was used to it, as she came from a hotter climate than ours. And she had cancer, but she was fine, compared to me. Ever since then, our summers have been blistering, and I am a sweat factory. I used to be able to tolerate heat better in my younger years, but it seems like that summer with Liz was the turning point in my tolerance level.

    We had a cloud cover today, and the sea breezes were very present. On my walk, I stopped on the sidewalk of our main street, and I took off my cap, spread out my arms, and I just let the breezes waft over me. It was glorious. Anyone driving or walking by probably wondered what I was doing. Well, I was praying, giving thanks for the coolness. I had been in the sun, walking, sweating for 2 miles, and that shade and that breeze was perfect.

    You, Kathleen, Rich, and your family are in my prayers tonight. And I'll be there with you tomorrow. All will be well, dear friend. Angels are watching over Kathleen. I'm sure of this.

    OUR UPDATE ~

    Jon had a good night, slept well, with low urine output. We irrigated his catheter at midnight, and he did produce more, but certainly not as much as we had hoped. We have to factor in the sweating, which occurred after I gave him Tylenol, and the Tylenol, which does affect the kidneys, and the MOM which directs fluids to bowels to get them moving.

    And did it ever work! Two bags full today. Like a week's worth of BM in a single day. Astonishing, actually. But, now he's stopped producing. So we see what tomorrow brings and go day to day.

    Jon had SATS of 97 today to our happy surprise. Heart rate normal, temp normal. Belly less distended. Urine still slow.

    We irrigated his cath in the morning and again early evening. Output is still slow, but color is good, and output is continuous. What more can we do? Not much really. Clinically, he seems to be fine. Vitals are good.

    I had to call our dentist's office today to send in my script for Amoxicillin before my cleaning. I had rheumatic fever, and I have RA, so I have to take it as a precaution for my heart. I told her that Jon had been ill yesterday, but that Jim and I are still determined to make our appointments, but to be prepared if we need to cancel. It won't be by our choice, but by necessity. We are blessed that our dentist really understands our situation, and that she and her staff love us. Well, they love everyone, actually, because they are just truly lovely people.

    In fact, I know that I'll be hugged a lot on Wednesday, when I go in, and asked lots of questions about Jon and Jim and how I'm holding up. I'll have to be concise, because I'll need to get home for my hair cut! It's silly, I know, but this is important to us, because fussing with our hair is just one more thing we don't need to do. If Jon is ill and needs to be hospitalized, I need to have easily manageable hair. I don't have time to style and fluff before I run off to the hospital for 12 hours. These are the kinds of things I think about when Jon is ill.

    For now, all systems seem to be go ... we'll see what tomorrow brings ~

    Love & Light,

    Rose
    Thanks Rose. Unfortunately you are absolutely right about people being inept. After I made that post that person's higher ups totally messed me up 3 more times! Unbelievable! These F*ck ups(excuse the language) have now led to my friend who saw that outburst earlier getting really angry because I cancelled 2 plans with them in a row with SUPER SHORT NOTICE. Now I'm terrified because in their anger my friend said some words that almost sounded like they meant "If you keep doing this we can't be work together or be friends anymore". I know this was said in anger and honestly I kind of deserve the anger. I could have prevented the outburst by not letting that jerk near my friend and could have waited before scheduling any events with them until I knew there would not be any problems. I know that the outburst my friend witnessed a few weeks ago has to be part of why they finally lost patience with me. But PLEASE PLEASE PLEASE PLEASE pray that my friend does not hate me forever! If that happens EVERYTHING my friend and I have ever worked for will be COMPLETELY DESTROYED!!! I can't lose them. Pray that my mentor knows these snafus will NEVER happen again and how TRULY UTTERLY SUPER SORRY I am! Pray that my friend knows I can't control the actions of others who are completely irresponsible.
    Does anybody have advice on how to prevent snafus like this? Do you have any advice on how to let my friend know they can trust me again? Am I simply over reacting? I told my friend that I just don't want to lose our friendship no matter what. Was this the right thing to do? Or will it make them more angry? HELP PLEASE!!! I know my worries are pretty minor compared to the medical needs in a lot of your lives but it's kind of like how you Rose feel about your hair. It's important to us for our own reasons. I'm sorry about the cavities Rose! That sucks! Maybe since Jon had a really big BM he doesn't need to go number 2 yet? I have no idea.

    Lisa, I'm also really glad Caitlin is off the pain meds. I agree with Rose on PT. I found an old picture of me with one of my PTs and all these nice precious memories of my sessions came back. I wish I had appreciated that PT person more. I always seem to take things for granted. The more PT you get a week the more effective it is in my experience.
    Last edited by funnylegs4; 09-24-2015 at 09:24 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  2. #32
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,045
    Blog Entries
    1

    Default

    ((((((funnylegs4)))))) ~

    Not knowing the situation or your connection to those involved in this conflict, I am not sure that I can offer you any advice or guidance in resolving it. The only thing that I can think of right now is a "clear the air" approach with your friend and/or mentor. You begin by explaining how these situations evolved into what they did, and then you describe how you have rectified/remedied all of the issues which caused the snafus. This is more than saying, "it won't happen again." You need to provide specifics on how you will assure that it will never happen again.

    Misunderstandings occur in human communication. It's unavoidable. Our only recourse is to try to clarify our part in the miscommunication to the receiver in a concise and honest manner. We have no control over how that individual will receive our message. So, all we can do is express ourselves clearly and hope for the best. Persuasion is part facts and part presentation.

    I understand your frustration and desperation, but try not to reveal that in your communication with the involved parties. Simply state that you are willing to work to regain the trust in your relationship with this person and how you intend to do that.

    I hope this is helpful to you. It's the best I can offer, counseling from "afar" and not knowing the particulars of the relationships and the conflicts.

    I'm praying for you that everything will be resolved, and you will be able to relax and be reassured in your relationships.

    Love & Light,

    Rose
    Mom to Jon, 48, (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.

  3. #33
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,045
    Blog Entries
    1

    Thumbs up

    ((((((HUGS TO ALL)))))) ~

    RASH UPDATE ON JON!

    The Hemp Hand Cream from the Body Shop has resolved Jon's rash!

    http://www.thebodyshop-usa.com/searc...20hand%20cream

    I can't say enough good things about this cream. I don't know why it's so effective, unless it's the hemp. But I guarantee you it has worked for Jim, our neighbor in renal failure, and now Jon, as well as me on my psoriasis. A little goes a long way, so it takes a while to use up a tube of it.

    I don't have stock in this product (but maybe I should, eh? ), nor am I employed by Body Shop. I'm just impressed with the efficacy of this over the counter "beauty product" on serious rashes!

    And while I'm on home remedies, just a reminder that Witch Hazel (found at your local drugstore over the counter) is a fabulous healing agent. If you bang your arm or shin on something, immediately grab a paper towel or even a kleenex, douse it in very inexpensive Witch Hazel, apply to the area you injured and tape it to keep it adhered to the area. Occasionally, douse it again while it covers your wound. This stimulates circulation, and reduces inflammation. You will have less bruising and much less pain. It is quite soothing.

    Jon's urine output has slowed again, likely because I had to give him 4 T of MOM to get his bowels moving again. We can't allow him to go longer than 2 days without a decent BM, because we've seen the result of that constipation in fever, distended belly, low SATS, accelerated heart rate, and all of the things we fear. So, his bowels have to move regularly, and if MOM is the only answer to that problem, then at least it is the oldest and most trusted form of stimulating the bowels. I guess. I don't know. I just wish he would move them on his own. But, maybe we are reaching the next level with Jon.

    Thank you for your prayers, and please know that we hold you and your children and families in our prayers.

    Love & Light,

    Rose
    Mom to Jon, 48, (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. #34
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Rose, That's great news about the rash. I have to look up that cream. Kathleen's sister and brother get very dry this time of year. Mostly around heir scalp.
    Praying that BM's will come naturally...
    Mary Grace

  5. #35
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,045
    Blog Entries
    1

    Default

    ((((((Mary Grace)))))) ~

    As you can tell, I highly recommend the Hemp cream! The proof is in the results we've seen. It took some time, but the cream cleared up Jon's rash. That's all we wanted, so it worked.

    Unfortunately, today, Jon's urine output, which was 100 cc/hr all night slowed down to 25 cc/hr this morning. His belly is distended, and he isn't pooping. His temp went up to 102, so we bathed him, but it still lingered close to that number, and we gave him a Tylenol. Temp is coming down, and he's sweating. That also affects urine output.

    We had to forestall the MOM, as that requires a lot of water with a full dosage. So I'll give that this evening. It's so frustrating.

    I wonder whether this is a prostate-related problem. I wonder why his motility is so slow suddenly. It could be the increase in his Dilantin, albeit that isn't a huge amount. Maybe just enough to constipate him though.

    We just keep treating the symptoms and praying that he isn't going to get a UTI and pneumonia again.

    How is Kathleen today? I gather that she is not back to school? If so, when will she return?

    Sending healing prayers as always ~

    Love & Light,

    Rose
    Mom to Jon, 48, (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.

  6. #36
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Rose, praying that all is going well with Jon. Hoping for a good update!
    Kathleen continues to recovery. She's adjusted remarkable well to the long leg cast. I'm amazed that she can actually move that leg with so much extra weight. She's a little restless at night but just because she can't sleep all curled up on her tummy like she's used to. She's only taking Tylenol once in a while when she seems uncomfortable, usually at night. We ventured out yesterday and went in to school to talk with her teachers and PT. Everyone was so excited to see her! If she's up to it we will start back on Monday for just a few ours a day. Just to get into a routine and up and moving. She'll get her PT OT and speech also.
    Mary Grace

  7. The following user says "thanks"


  8. #37
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,045
    Blog Entries
    1

    Default

    ((((((Mary Grace & Kathleen)))))) ~

    I hope that Kathleen is up to going to school on Monday, and that she will benefit from being there and receiving therapy. It's just so great to know that she is recovering well. I'm sure you are relieved!

    Keep us posted!

    Prayers continuing ~

    Love & Light,

    Rose
    Mom to Jon, 48, (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.

  9. #38

    Default

    See October thread.. posted inwrong one.
    Last edited by CPchick; 10-04-2015 at 02:34 AM.
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

Page 4 of 4 FirstFirst 1234

Similar Threads

  1. End of Summer CN Updates!
    By andromeda31 in forum Child Neurology
    Replies: 18
    Last Post: 08-23-2015, 12:22 PM
  2. December updates!
    By andromeda31 in forum Child Neurology
    Replies: 9
    Last Post: 12-23-2014, 08:07 PM
  3. Prion 2014 typical and atypical bse and cjd report updates
    By flatfish in forum Creutzfeldt Jakobs Disease (CJD)
    Replies: 0
    Last Post: 06-23-2014, 08:08 AM
  4. Kathleen's appointment updates
    By mg12061 in forum Child Neurology
    Replies: 4
    Last Post: 09-23-2013, 06:32 PM
  5. Checking In With Updates!
    By sccandice in forum Aneurysm
    Replies: 6
    Last Post: 09-16-2012, 03:32 AM

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.