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Thread: The Really Good News

  1. #11
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    Hi Earth Mother, I just have to say I am so happy at the fact that you found what sounds like a totally awesome PT!! It made my day to hear how caring the PT is. My PT experience has ranged from really bad to great so I'm glad you found a great one.(I work best one on one with male PTs for some reason) As I get older I understand what PTs really do and what they did for my body since I was a baby. I wish I had shown them more appreciation back then. I am so sorry they initially said that nothing could be done for Jon. From what I hear that is very common for people with neurological disabilities(like Cerebral Palsy)to hear from physical therapists. I find it infuriating that the supervisor didn't even want to try. I am also very sorry to hear about the setbacks and seizure. I have been to enough PT to know that everything in the body is connected and the setbacks may just be reactions to the fluids now moving around in Jon's body. Hopefully you will get through the setbacks and can go full speed ahead with the PT!! I think the PT will really help Jon in the long run. I want him to be able to use his wheelchair again!!! Good luck!
    Last edited by funnylegs4; 09-01-2014 at 11:38 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  2. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mary Grace & funnylegs4)))))) ~

    Thank you so much for your prayers and good thoughts, positive energy and loving support.

    I'm so glad Jon's PT will be here tomorrow. To think I only asked for one consult! PT knew better!

    Jon is retaining more fluid again today. He held his urine for 12 hours again. He started releasing 100 cc every 1 1/2 hours this evening, which I pray is a trend and resolution. SATS were low, heart rate was high. Temp is nearly 100. We suctioned his trache about 3 times this morning.

    We reviewed Jon's chart, and Jim suggested that we forgo the pillows and Poseys today. I disagreed and noted that he went without the pillows and Poseys to accommodate his sleep the other day, and this may be the result of that situation. If we don't follow the protocol, it will never work. So we plunged forward and positioned Jon's legs after his skin movement.

    This evening, I gave Jon The Spa Treatment, as his "Toenail Gals" are visiting, as well as PT. He is squeaky clean and smells delicious from all of the organic fruity bath/shampoo products I use. He's a 6'1" Smoothie!

    I think tomorrow, we need to point out to PT Jon's autographed picture of Tommy Lasorda (Dodgers baseball legend), and Jon's 8x10 glossy, autographed by all of the Doobie Brothers. That should impress PT sufficiently and stir up some conversation. Yeah, Jon has rubbed elbows with some noteworthy people. Jon loves for me to tell the stories of how he met Tommy and the Doobie Brothers, so I know that will relax and please Jon during our session. And I know PT will be impressed. I can bet on it.

    The girls will flirt and chat sweetly with Jon. They'll tell him how handsome he looks in his shirt, and how it matches his blue eyes. They'll hold his hand and smile upon him with love. The youngest (in her 20s) will talk about sports, and the oldest (in her 40s) will tell Jon how brave and strong he is. They will be delighted that PT is on the team, as anything to help Jon is their desire. They adore him, and they are just wonderful to me and Jim too. Like family. We are so blessed.

    I am looking forward to demonstrating to PT how Jim and I have been positioning Jon, and how I've been moving Jon's skin, so that PT can correct us or reinforce that we're doing everything properly. I feel that we really need this feedback. And PT is so patient and such a good teacher, I'm sure that we'll be well informed by the time he leaves us. However, I am still willing to consider building a room over our garage for him to move in with us.

    And, funnylegs4, I think you may have something there with your theory of the fluid movement ~ that's why I mentioned it is like a toxic withdrawal. When the body readjusts, it can often result in the condition worsening, before it gets better. We'll see what PT says tomorrow about that. And I'll report back here!

    I love you all ~

    Love & Light,

    Rose

    ~ Remembering Brion Larson ~
    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. #13
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    Hi Rose, how did the appt with the PT go today? I am hoping and praying that he made a fine adjustment to Jon's treatment that will increase his sats and help with the fluid. Prayers it's something simple (one can pray, right?) Sending love and a long hug to you all, Donna x
    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


  4. #14
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna)))))) ~

    All went well with PT's visit today. First we brought PT up to date on Jon's week. PT had read our email today, so he knew what had been happening. He said that Jon's urine retention with his catheter is not related to the PT positioning or massaging. He surmised that it was a catheter problem.

    He's right. This happened a couple of years ago, when Jon's catheter wasn't fully in place after his nurse inserted it. She left for vacation, and Jon's peeing went from continuous to every 4 or more hours, just as it is now. The nursing supervisor coached us, talking to Jim on the phone, who repeated the instructions to me, on reinserting the catheter. But I didn't go in far enough, so the next day, Jon's other nurse came out, reinserted the cath, and Jon peed continuously.

    Just eyeballing Jon's cath, we can see that it is out a bit (too long). So I'll be calling Jon's nurse tonight, hoping she can come by tomorrow and reinsert the cath. I can try, but because Jon's prostate is an issue, I fear hurting him or causing bleeding. It's really best if she does it. I just hope she's working tomorrow, as her days are different every week.

    It has to be done, as Jon held his urine for 12 hours again last night, and that just can't be good for his bladder.

    I do think that the catheter was pulled out as a result of the positioning with the pillows. It also began, after we turned Jon on his side to change his underpad, so it might have been pulled out then. I'm thinking that his cath will need to be taped down on his leg close to his Guy.

    PT examined Jon, noted the significant reduction in fluid in his feet, legs, calves, and even in his torso. He remarked on Jon's skin change, no longer shiny and taught, but now pliable. He said it appears that we've been doing everything right. But to be certain, I demonstrated to him how I do the skin movement, and I was going too fast with not enough pressure. Then we demonstrated how we were positioning the pillows and Poseys, and PT gently offered advice on how to get a better position, while praising us for what we'd done. This man is amazing.

    It's like being in a physiology class with a fabulous instructor. I want to take notes, but I can't, because it's hands on. And, if he gave us a test at the end of the session, I am not sure that we would pass. It's just so much science! Brain ... no go there ... information overload!

    We asked PT what we could do to mitigate Jon's leaning to the left, and he answered, "Move the TV." We can do that, and we will do that. I explained this afternoon to Jon how we were going to rearrange his TV cabinet, and he smiled. I guess as long as it's on, and he can see it, he doesn't care where it is. At least we hope this works.

    PT explained that Jon's legs aren't actually contractures, and he used another phrase, which I can't remember now. What is important is that his legs aren't doomed to be windswept. Once we achieve more range of motion and straightening through the pillows, we will be moving him from side to side. There is much more ahead of us in this journey. And believe me, it is a lot of work for all three of us physically! But it is so worth every bit of effort to see that fluid out of Jon's feet and legs. The hopefulness within us gives us energy to keep going.

    PT told us that he has requested 8 visits for Jon, but he said that if Medicaid doesn't authorize it, he will come anyway, as long as Jon needs him. The agency is associated with a Catholic hospital, with a mission to serve all, who are in need. So, we agreed that I would let PT know by Saturday whether we needed him to come back next week. Once we have the catheter issue under control, we should be okay with our daily therapy with Jon. PT could then return in 2 weeks, and we might move then to the next phase.

    Podiatry Girls visited first, but this time the oldest gal wasn't there, and another gal was assisting the younger gal. I found out today that the older and younger gal are Mother and Daughter! And last night, Mother fell down some stairs, and she was getting x-rays and being examined today. So Daughter took over Mother's duties. And she did a great job, and flirted with Jon, as did the new gal.

    A busy and fruitful day. Once we rectify this catheter situation, I will be more relaxed. Or, less tense.

    Just for amusement ~

    When PT arrived today, Jim opened the door, as I was walking down the stairs. PT looked up at me (he's young enough to be my son, not quite young enough to be my grandson) and said, "Wow! I love your scrubs! You look so nice!" For a moment, it was like my Prom Date had arrived, and my dad had greeted him at the door. It was so weird. Especially since I didn't attend any proms.

    So, I explained to PT that Jon's nurse had given me this teal scrubs set for Christmas, but I was overweight and couldn't fit into them. She offered to exchange it for a larger size, and I said, "No. I'm going to lose the weight so I can fit into this scrubs set. This is my inspiration." And 23 pounds lighter now, I can wear it comfortably.

    I went from Prom to Mom in 20 seconds!

    Ahhh ... Life ...

    Love & Light,

    Rose

    ~ Remembering Brion Larson ~
    Last edited by Earth Mother 2 Angels; 09-02-2014 at 07:01 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. #15
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    Ahhh good news Rose! Good luck with the cath placement tomorrow and hon, you will always be Mom at the Prom!!!! Beautiful and so lovely to have compliments eh? But forever a Mom, that's for sure! If you can remember what PT said instead of contractures, I would love to know because Nick's legs are windswept too. Pelvic obliquity maybe? Anyway, this is all fascinating to read! Sending love as always! xoxo
    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. #16
    Distinguished Community Member andromeda31's Avatar
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    That is so awesome that the PT will keep coming! So glad to hear Jon is improving so much and I pray it continues!! :) I can just picture the stairwell scene...congrats on the weight loss! :)

    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!!

  7. #17
    Administrator/SYSOP Mike Weins's Avatar
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    Great news Rose :) Happy to hear that Jon's feeling better and that you have such a wonderful PT dude :)
    Question: Why can't I post links or pictures?
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    Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

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    Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  8. #18
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Exclamation More Than We Bargained For!

    ((((((Donna, Lisa, & Mike))))))

    Thank you for your love and support!



    (found that emoticon and I gotta use it! )

    Nurse Visit

    Wouldn't you know it? Jon started peeing this morning ~ after 7 hours with no pee ~ and by the time his nurse arrived, he had 1300 cc in his bag. It wasn't continuous, but it was more consistent and frequent.

    God Bless Jon's Nurse, who with a full load of patients today, juggled some around, so that she could visit Jon and work with his catheter. She is just the dearest person, and such a great nurse and friend and family member to us.

    We figured she'd be in and out within 15 minutes, because she was only going to move the catheter up a little bit. Well, an hour later ...

    Catheter Adventures

    First, we measured the cath, then we got it nice and clean with alcohol and Betadine. She slathered it with lubricant, deflated the balloon, and moved the cath up gently. Suddenly a fountain sprung up from Jon's cath! He was peeing over his catheter, and I'm not exaggerating, it looked like a fountain, and he kept going and going!!!

    Of course, he didn't have an underpad beneath his cath, so the bed was flooded.

    Once that golden shower ended, she re-inflated the balloon, and we waited for urine to start flowing. Nothing. So we did vitals, and they were stunning. STUNNING!

    Still no pee, so she measured the cath, and it was the same length as it was before she moved it!

    We stood there together staring at the cath, and we agreed it looked funky. Could it be defective? She postulated, "Well, how long have we been doing this? Maybe our luck ran out, and we got a faulty one!"

    So, we decided to change his cath. He isn't due until the 15th, but this obviously wasn't working. First, I asked Jim's opinion. Poor man was still up, eating a sandwich ~ his first meal of the day, after running errands, getting groceries,etc. Two hours past his bedtime. He just deferred the decision to us. Wise man, he is.

    Cath change went without a hitch, but no pee immediately. To be expected, as he'd emptied his bladder with the fountain, and she uses a lot of lubricant, which takes some time to melt.

    She was thrilled to see the improvement all over Jon's body from fluid reduction, and she said to us, "I had no idea that a PT could do this to help with lymphedema." And I encouraged her to ask for our PT to consult on any of her patients, who need positioning for any reason. PT knows the body, knows the lymphatic system, knows what works, knows how to teach care givers. He's got it all going on. Huge benefit to nurses, I would think.

    After Jon's nurse left for her next patient, Jim and I tackled changing Jon's bedding and soaking up the pool left after the fountain was turned off. As soon as we laid Jon flat to turn him, he started peeing, and put out 150. We were so excited! Perfect color, no residue, just marvelous urine! (I know ... that's not how most people regard urine ... but in our shoes ... it is like a precious rare jewel!)

    We bathed Jon, cleaned his mattress cover as best I could, and set him back up, and he was a happy camper.

    And then this happened:

    Two hours transpired, with no evidence of pee.

    Finally, he released 100 cc.

    If I were Jon's bladder, I would be quite confused. Okay ... I have a cath, and I peed continuously. Then that stopped, and I held the urine for anywhere from 1 to 12 hours. Then, my balloon was deflated, and I sprayed over the cath. Then I got a new cath. What do these people want from me? What do they expect me to do???

    Oh dear, now I'm trying to think like a bladder. I may be losing it, my friends ...

    If Jon Had a Urologist ...

    I would contact that doctor for an opinion. Is it possible that holding so much urine for 12 hours could stretch the bladder or cause bladder issues?

    Alas, none of our hospital urologists are willing to take Jon, because he is a Medicaid patient, and they can't "cure" him. In 2011, the urologists all concurred that Jon was a hopeless case. Just cath him, take him home, let home health care worry about him, and let him go.

    To them, I say, "Hey, doctors! Look, he's still here."

    And just as we have always, we will work this out, without you.

    We remain on Pee Watch, and just in case the flood gates open tonight, I gave Jon a little extra Depakote and Dilantin this evening.

    I love you all!



    (you knew that was coming!)

    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. #19
    Distinguished Community Member andromeda31's Avatar
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    Hi Rose!

    Could the catheter be sensitive to the new positions? Just a thought...I don't have much experience at all with catheters...

    Lisa O.

    **I never looked at those emoticons before...can't believe all the different choices! Will have to play with that more! :)
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  10. #20
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    Retaining urine for that long can push the urine back up into the kidneys and cause a world of nasty infections. We were warned of that problem when Tyler began holding his urine for 18-20 hours. When they cathed him that time, they took off 900cc of urine. The average bladder holds around 350 cc normally so he was way above that. We do occasionally take 600-700 cc off if he has held it overnight, but the norm is about 300-400 cc's for Tyler. Sure hope you are able to figure out the problem before any infections set in. Since Tyler gets them on a regular basis we keep antibiotics on hand but we never know until the lab cultures the sample, what kind of infection we are looking at.
    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."

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