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Thread: The Really Good News

  1. #21
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Question It's All About the Catheter ...

    ((((((Lisa)))))) ~

    Yes, I think that this does have something to do with the PT positions. It has to be related, because it started 2 days after we began PT positioning/massage. The first 2 days, Jon's output was voluminous. On the third day, he stopped peeing continuously. An indwelling catheter is supposed to empty the bladder continuously. A certain amount of urine needs to be present to push out the urine, so there are breaks, but typically only a few minutes to perhaps a 1/2 hour.

    My concern is that his bladder is now trained to empty this way, dumping 200+ cc's every 2-5 hours. When an indwelling is no longer needed, it is clamped to train the bladder to hold the urine for a few hours, then release it. How many times a day do most of us with "normal" bladders void our urine? That's the goal of training the bladder to wean off of an indwelling catheter.

    I was hoping that the placement of the new cath would somehow alert the bladder that things are changing, and Jon's bladder would empty continuously as it has before.

    But, he went 7 hours during the night between voiding. Now that's "normal" for someone like me, or you, who doesn't have a catheter. Then he took another 3 hours before he voided about 100 cc. Then two more hours, etc. By 3:30 he had 700 cc since midnight. When he pees continuously, he usually has 1,000 cc or more at that time of the day. And yesterday, before the nurse changed his cath, he had 1300 cc in his bag at 4 p.m. So he was ahead of the game then.

    Jon receives the same amount of water everyday, with his Gtube formula and his water flushes, a total of 2,000 cc. Of course his organs utilize some of that water, and he sweats out some of it. So, if his 24 hour total is 1800 cc, we're fine with that. If it's less than 1200, we are a bit concerned. If it's too much, that is also concerning, although it is expected, according to PT, as he moves the fluids around with this therapy. We aren't redistributing the water in his body/lymph glands, we're endeavoring to move it OUT of him.

    While there is evidence that the process is working, I have a concern about this change in his bladder habits. Next week, I'm going to run this by Jon's PCP, and see what his opinion is. If he tells me to consult a urologist, I'll have to remind him that they all gave up on Jon in 2011. "You've got the paddle doc. You're the guy who is rowing the boat."

    Whew. It's just another confounding mystery ...

    Oh, and emoticons can be fun. I discover something new every time I explore our emoticon offerings. Here's one of my favorites and where I wish we all were right now:



    ((((((Tamie)))))) ~

    Thank you for sharing with me that vital information. Infection has been a premium concern for us with this urine retention.

    While Jon is holding his urine for several hours (up to 12 a few times), he is voiding his normal amount for a 24 hour period. Does that make a difference in infections?

    Also, his urine currently looks like white wine in the tube, but more yellow in his bag. It is clear and clean, with no odor, no unusual sediment.

    I just checked Jon a few minutes ago, and he was peeing and peeing and peeing ... just a steady stream of lovely clear urine. Total output was 400 cc. He's now up to 700 cc since we emptied his bag during his turn at 3:30 and it's 6:30. His total so far in the 24 hour period is 1400 cc. So, this is good.

    In a way, this might be a blessing. It just occurred to me that Jon's seizure occurred after he had a voluminous output of urine in a 24 hour period, peeing continuously. My guess is that his Depakote and/or Dilantin levels dropped, because he excreted too much in his urine. If this is the case, then he's better off not peeing continuously, but still voiding a reasonable amount of urine daily.

    Does that make sense? I'm so exhausted, I have no idea ...

    I am cooking dinner for Jim and me for the first time in 2 weeks. For one thing, we were out of food! Jim was just too worn out to go shopping. I'm making Herbs de Provence steamed carrots, ghee-sauteed zucchini, garlic, basil, sweet onions, and mushrooms, and broiled boiled potatoes with an olive oil, cilantro, green onion marinade, and dusted with Parmesan. I'm tired just writing that! It's half way done.

    Thank you both for your love and support. My prayers are with you ~



    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.

  2. #22
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    You're welcome! Sometimes you need to think like a body part to understand it! You are not losing it Rose. :) If I were Jon's bladder I would think the same thing. I have to wonder if he just emptied himself of pee from the "fountain" so he doesn't have to release as much pee. I know nothing about catheters! All I can theorize is that either he has no pee in his bladder(If I have no pee in my bladder I simply won't be able to pee no matter how hard I try),if he is not retaining fluid in his body as much he may not need to pee as much because everything just flows better, or the pee is stuck in the kidney which is bad. I heard of one person with no legs getting tubes inserted into his kidney like a catheter because a regular catheter in his bladder did not work for him and he was at risk of becoming toxic from the backed up pee. Good thinking telling the nurse about the PT. What you said reminds me of when my favorite PT said "PTs understand movement" Ahh sweet memories. I love when PTs are hands on. It is amazing what you can do for the body if you know how. Lisa makes an interesting point about the cath being sensitive to the new positions. When I learned to align my pelvis/tailbone correctly it changed the pattern of my BMs. My BMs got better though so I don't understand why a healthier alignment would plug Jon up in the pee department. Hmm... Thank you for taking my comment that everything is connected seriously. More prayers coming your way.

    EDIT: Saw your new post after writing this. Sorry Rose. The PT is right that the fluid should move OUT. I think as long as he pees the right amount in 24 hours the kidneys are fine since something is coming out.
    Last edited by funnylegs4; 09-04-2014 at 06:21 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
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  3. #23
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    Rose, I had to laugh reading about the "lovely clear" urine. I get it... It's so funny what will bring a smile to my face now. "lovely clear urine" LOL. No "sludge" or dark color or those "fluffy" things LOL. So glad things went well and you got his catheter changed. Kathleen's bladder is quite larage from holding urine for so many years and it was definitely getting into her kidneys that's why we started to cath. her.
    Funnylegs, I find it interesting your mentioning "aligning" your body. Kathleen's body is so out of alignment it looks painful at times. I'm glad you brought it up because I will mention it to the dr. she will see In Boston.
    Mary Grace

  4. #24
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Progress!!!

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

    Yes, alignment is key. Jon's alignment is so out of kilter. He leans to the left. His legs are windswept, with bent knees. These are the things we are attempting to correct with the pillow and Posey positioning. (Mr. Poppers Penguins ... ) (Sorry ... I'm tired and a bit punchy. )

    PT explained to us that with proper alignment the bladder and bowels work more efficiently. Proof in the pudding, so to speak, is the result you achieved with your bowels. And Jon's bowels are moving better since we started PT. Urine output is sufficient, in fact yesterday his 24 hour output was 1950, which is very good. It's just that he holds it in for so many hours, until he finally excretes several hundred cc's.

    But the results are amazing! This morning as we were doing the skin movement massage, we were just astonished at Jon's feet and calves. They are NORMAL! No more swelling!!! Jon is shedding his skin like a snake, which is expected. We are making progress!

    However, Jon's torso and thighs are still retaining fluid. PT explained that fluid leaves the limbs first, then goes to the torso. So, we're anticipating now that the fluid will begin leaving his torso. Jim has learned the skin movement massage, so he does Jon's right side, and I do his left side, and Jon just lays there so incredibly relaxed and content. It's actually a very peaceful, healing, Zen-like time for all 3 of us.

    I really appreciate your insight and experiences. Thank you so much for sharing with us.

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

    Well, when you do the Dance of Joy over lovely clear urine and regular bowel movements, then you're in a very elite and special club!

    Most people don't have to think about their bowel and bladder habits, but when there is an issue there, it is generally a Big Deal. Since the bowels and the bladder empty our waste, when they don't work, we're a walking infection waiting to happen.

    So, when we see lovely, clear urine, we are ecstatic! And when bowels move as they should, we're over the moon. You, me, Donna, Lisa, Tamie, funnylegs4, CPChick, all of us. And probably many BT members. Because we all know that everything is connected. And it all needs to work properly, so that nothing else is affected by its dysfunction.

    We cancelled PT's visit for Tuesday, and Jim and I will continue doing what we're doing. PT will visit next week. Depending upon our progress, we may learn how to turn Jon with pillows in bed. Jon might resist that.

    We still haven't moved Jon's furniture or TV. We must do that this week so we can determine whether it will cause Jon to lean right, rather than left. Jim claims this won't be a big deal. HA! I just ordered/received 10 new DVDs for Jon (replacing old VHS, plus new movies). We have nowhere to put them, and moving isn't going to help that situation. Jon has an oxygen concentrator in his room. I need to get that out of there, I guess, to give us more space, since he's never used it. You wouldn't believe the paperwork I have to go through to get that out. I tried to do it 2 years ago and gave up.

    Thank for your support and love ~ everyone ~



    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 09-08-2014 at 05:33 PM.
    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.

  5. #25
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    Wow wow wow wow wow!!!!!!! I can't believe the difference this treatment is making. Rose, if you collected all the posts here at CN over the years that you've written about fluid retention, I think they would fill a moving truck - no one thought there could be a non=invasive treatment you and Jim could carry out that would have these dramatic results. It's a miracle, plain and simple. I am so happy happy happy for you all!!!!! Prayers of thanks! xoxx
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  6. #26
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    Smile Moving Forward~

    ((((((Donna)))))) ~

    Thank you!!! We are happy too!!!

    I don't even know how many years Jon and we have been contending with the fluid retention. Every time Jon was admitted to the hospital, his feet were swollen 3 times their normal size, and remained that way in hospital, while he gained more fluid. And even when we were able to get him out of bed to his recliner, and we put hospital socks on his feet, the socks were difficult to put on, because his feet were swollen.

    His thighs and calves. When we turned Jon to change his under pad, his legs were so heavy. Everything that touched his skin left an impression. Deep impressions from just a scrunch in his under pad or his sheet.

    And we've had home health nursing since 2004. Never at any time did any nurse suggest that we needed a PT to assist with positioning to get rid of the fluid. We were always told, "Get him out of bed."

    The only other option posed was giving Jon lasix. Even Jon's ICU docs didn't want to give Jon lasix. And the last time we gave it at home to Jon, he had a seizure. I won't do it outside a hospital setting. We just were at a dead end with Jon's fluid retention.

    Of course, Jon went through even more with his previous feeding system, where he filled with gas, on top of his fluid, which caused him to gag, choke, and vomit.

    Imagine ... if we had had a PT and a closed feeding system, he and we wouldn't have had to go through the ordeal of suctioning to keep him from drowning for 5 hours every night, weeks, months, years on end.

    I didn't request the PT for fluid reduction. I wanted to correct Jon's windswept legs and find a way to get Jon to lean to the right or sit in the middle of his bed. And the initial PT assigned was not an expert in fluid reduction. So we were doubly blessed with our PT.

    When PT was so positive that we could get that fluid out of Jon with just pillows, Poseys and skin movement, I cried. It seemed unbelievable to me, but he assured us that we would see results quickly. And we did.

    Jim and I are constantly pointing at Jon's feet, exclaiming gleefully, "Look at his feet! Look at his feet!"

    And the dead skin is dropping off of him. Trust me, we have tried every lotion, oil, and cream in existence to prevent this dry skin on Jon's legs and feet. Nothing worked. That's because his skin was stretched to the limit, and none of the fluid was going to his skin to moisturize it. Our wound care nurse told us years ago that the skin is the last place to receive nutrients and fluid, while the body is battling other major issues (like pneumonia) (or apparently, lymphedema). And, our skin is our largest organ.

    Seeing Jon's skin return to a normal state is absolutely remarkable, after all of these years of scales and cracks.

    Jons SATS, heart rate, temp ~ it's amazing. Where he was struggling from a SAT of 77 upon awakening to get to 92 and hold it, he now wakes up with SATS of 95-97! Heart rate was always elevated in the 80s to 90s, even on good days. Now his heart rate is in the 70s.

    He is now more vocal, more articulate, not gasping for breath when he speaks, more alert, happier.

    I try not to follow the trail of crumbs leading to The Guilt Trip, because I didn't think to request a PT consult sooner, like, years ago. The hospital PTs were useless (I did request a consult twice when Jon was in hospital), and the one home health PT we had years ago wasn't interested in helping Jon. Maybe I just didn't have the necessary faith in PT to ask for it.

    I can't go back, or change the past, but I can move forward, and change the future. So that is now my focus.

    I'm visualizing that moving truck, full of my posts about fluid retention, driving away from our home, as I wave goodbye, and then return to Jon with hope and joy.

    Things are looking up!!



    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.

  7. #27
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    It's just unbelievable. I have done a lot of PT with Nicholas and I haven't heard of it being used for fluid retention either. Never heard of it. If Nick ever gets it, I'll know what to try first! It's like with Nick's stoma, it's still very red and we've tried everything including oral antibiotics and even eucalypus oil as you suggested. It's just constantly leaking and we're waiting for a new one (different size). Anyway, his night nurse last night that did I remember we used to smear Gaviscon or other liquid antacid around the stoma? And that was a forehead slapping moment. I remember it worked but I'd forgotten all about that treatment! So i went today and bought some and we're trying it today. Hopefully his skin will be better tomorrow!!! No guilt though, we do the best we can and our brains aren't getting younger! Sending a gentle hug to you all at your house! xox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  8. #28
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    ((((((Donna & Nick)))))) ~

    "Forehead slapping moment"! Thanks for that! Just perfect!

    I'm so glad that Nick's nurse remembered the Gaviscon. I do too, now that you mention it! Prayers going up that it will work quickly and effectively for Nick. And where is that new, larger button? On a slow boat from China? Are scientists designing a special new button just for Nick? What is the hold up?

    And oh, are you so right, about our brains not getting younger! Mine feels like a sieve sometimes, and Jim ... oh dear, he worries me periodically. And I process far more information than he does on a daily basis. If I become incapacitated in any way ... well, it's just a scary thought.

    ****** U P D A T E ******

    So, I've learned that I need to stop posting these glowing reports, because the next day, things go South.

    Jon's SATS were 88 when he woke up, as opposed to the 97 we've been getting for days. Heart rate in the 90s not the 70s. Temp all day of 99.7. Urine output has been excellent, but still not continuous. And bowels ~ well, he produced a bowel through his rectum again today! That is not supposed to happen with a colostomy. Albeit his colostomy is 10 years old.

    I'm thinking I need to call our fabulous GI doc, since this should be within his purview. Jon's nurse said, "it's not abnormal for this to happen." Well, it is for Jon. And so is lymphedema. So, I need to seek an expert opinion. Oh, dear Lord, let the answer NOT be a colonoscopy for Jon!!!!! That would just be so horrible in every way for Jon. In Every Possible Way.

    Today, Jon has been supporting his hip, with the rod and pins, with his hand under his hip. We can see the pain, so we decided to de-elevate that leg today, which seems to be relieving him a bit.

    I have had this kind of day:

    I'm a Mother. That in itself, according to Oprah (she, who knows all ), is the most important job in the world. I'm not a doctor, a nurse, or a medical professional. Why is it always up to me to figure out what is wrong with Jon?

    And: Oh No! What if Jon Needs A Colonoscopy?!?!

    And: Now what should I do? What's the best course for me to take now?

    Then, I briefly closed my eyes and went here:



    Tomorrow is another day. I pray that you will report that the Gaviscon worked wonders for Nick's stoma and that the new button has arrived.

    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. #29
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    Ooooh no. Could the change in BMs be related to the PT treatments? It's the only change that has been recent. I am so sorry that your sweet Jon is having pain in his hip!!!
    I'm so with you in hating all this unknown! I pray that sats stay up and things come back to normal - you are all in my prayers. Today I went over to my old friend's place - she is my mentor (another disability Mom) who helped me from the day after we got the diagnosis for Nick at aged 5 months. Yesterday, he husband passed away and this week, her son with disabilities turned 40. The family is arriving for the funeral tonight, so I cleaned my friend's apartment and changed sheets - getting ready for family to stay for the funeral. Very emotional day. There by the grace of God.... Love to you and hope Jon feels better tomorrow! xoxox
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  10. #30
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    Oh dear Rose, 2 steps forward one back... How frustrating. Praying that this too will resolve without any drastic measures. It's so draining being the detective and advocate, but your awesome and getting answers and relief for Jon. Not to mention helping others along the way.
    What a beautiful place to escape to!
    Mary Grace

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