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Thread: little update...

  1. #1
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    Default little update...

    Kathleen continues to feel pretty good. I'm not sure but I think we're having a little glitch in the catheterization through the stoma. I started to see the volume of urine decrease quite a bit. At first I thought maybe this was a good thing that she was voiding more on her own. I started to measure her voiding and it did not increase pretty much the same or less. I've tried moving the cath. a bit but it seems very uncomfortable for her especially if I try to go in further. She's had some accidents about half an hour after she voided and cathed., and she's had some bladder spasms not long after which were relieved when she voided again or cathed. Yesterday she had 2 accidents not long after cathing. I've also noticed that the stoma seems to be leaking urine, and a couple times bloody urine. I can only tell if it's bloody when she has a white shirt on. I spoke with the urologists office and we're doing a 24 hour log and going to get a urine test for infection. This morning she only voided 150cc's cathed less than 50,(she usually has a large volume in the morning. She voided 3 hours later and voided only 50 and cathed less than 50. No discomfort or accidents yet. Hopefully if there is a problem it's easily fixed. She's drinking plenty still we're always carful of that because of the moyamoya.
    On positive note we spent 2 days at Lake George in ny. Great weather and Kathleen had a great time. She LOVED the arcade. cot us about $30 for a little Angry Bird stuffed animal but well worth it. By day 2 she layed her head down on the concrete by the pool and fell asleep for an hour.
    Mary Grace
    Last edited by mg12061; 08-20-2013 at 06:32 AM.

  2. #2
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Glad she had a fun time on vacation and that the weather was good! We are pushing our zoo trip back to next week and hoping it cools off a bit. We were going to go tomorrow but they are predicting 90 degrees and afternoon thunderstorms and Caitlin doesn't do very well in the heat (nor do I!). Hope the doctor have some ideas to help her spasms & leaks....that sure does not sound pleasant at all for her. ((((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!!

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    ((((((Mary & Kathleen))))))

    I'm so sorry to hear that Kathleen's urine output is lower than usual. I would wonder whether she might have a blockage somewhere. The fluffy white bits can congeal and cause a blockage/back up. If Jon has a leak, that's the first culprit we address. Is it possible to irrigate her? I don't know how her specific cath system works. It's just a thought, since I know that is what we do with Jon, if his peeing slows down. We flush the cath with 50 cc of saline, get a return, and hope that it dislodged the clog.

    Is the stoma bleeding or is the blood in her urine?

    If the stoma is bleeding, check the stoma for granulation tissue (stoma looks larger than usual, swollen, perhaps "pebbly"). Granulation tissue can be conquered using essential oil of eucalyptus. A few drops mixed in 25 cc water, soak a 2 x 2 pad in the mixture, then place the pad on the stoma for 15 minutes. If you do this daily, you should see a reduction in size within a week.

    If there is blood in her urine, it might be an irritation of the tissue during cathing. Jon periodically passes a trace of blood for no apparent reason, but it could be from movement, or something that's been lingering there for a few weeks.

    I'm glad you're in touch with the urologist, and it's a good idea to do a UA to rule out infection. I will pray that the results are negative. But be prepared. Any cathing process generates bacteria, and some are typical and not needed to be treated. For example, Jon will always test positive for pseudomonas, because he has an indwelling catheter, and that is typically occurring for indwellers. To keep the pseudo down, we use a silver-tipped catheter.

    So happy for you all that you enjoyed a couple of days vacation at Lake George. You sure have earned a vacation this year! Your brave girl is such a trooper. And so are you!

    Please keep us posted. Prayers going up that all resolves well and quickly.

    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.

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    Rose, thank you, that's exactly what I was thinking that it's getting clogged. I do see some of the fluffy stuff. We may even have to go to a larger size catheter. It can be flushed and I'm hoping that's all it is. I hope this isn't uncomfortable for her. I brought her urine sample in and the stick test was good but it will be sent out for cultures also. It seems to be bloody urine the stoma looks good. She did have granulation tissue with her mic-key button. I will look a little closer at the stoma though before I talk with the dr. It's definitely leaking urine though. Im hoping to get this all figured out before school starts. 2 weeks from today is her first day back.
    Lisa I hope it cools down enough for Caitlin to get to the zoo. The heat is one of Kathleen's worst enemies. She loses concentration gets very flushed and tired very quickly even in the winter if the room is too warm.
    Mary Grace
    Last edited by mg12061; 08-21-2013 at 05:48 AM.

  5. #5
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    ((((((Mary Grace))))))

    Sure sounds like a clog of fluffy stuff. You might need to flush her cath on a regular basis (every other day? once a week?) to keep her flowing and going.

    When Jon first got his catheter, he couldn't go more than 15 days without major leakage (I mean 200-500 cc several times a day ~ lots of baths and linen changes). We increased cath size (which is actually an increase in the size of the catheter's hole) twice, before we conquered it and could go the full 30 days before a cath change.

    So, your thought about increasing Kathleen's cath size is right on target. (Smart cookie, you! )

    Should she have granulation, I highly recommend the eucalyptus oil treatment. It's natural, good for the respiratory system, and it works. Just make sure that it is pure essential oil.

    A bit of blood in the urine is not generally something to worry about, except that I always do! Movement can certainly irritate the tissue, even doing the cathing can irritate the tissue. Is the blood bright red or dark red? Is it frank blood or small clots of blood? How much blood (in cc's) would you estimate she's passing? It's difficult to tell when it's mixed with urine, I know.

    Praying that the UA is clear, and that you get this leakage, low output sorted out, and the bleeding stops.

    You're doing a great job, Mary. Hang in there!

    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.

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    So urine culture was negative yeah. I spoke with the Dr. he wants to do a urodynamic study. His thinking was that maybe it's a good thing and she is voiding better on her own. This can happen after keeping the bladder empty the muscles relax and are not all stretched out all the time. He may be right except for the accidents not long after I cath her. This part doesn't make sense to me. She hasn't had any more bloody urine leaking so it may have been just an irritation. Her urodynamic study is 9/17.
    Mary Grace

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

    Yay! No UTI! Yay! No more bleeding!

    As long as Kathleen's output per day is a decent quantity, then I agree, it's better if she voids it on her own, rather than when cathed. As for the accidents after you cath Kathleen, I might tend to think that that is an indicator of needing a larger catheter (bigger hole).

    Sending prayers that the urodynamics study provides helpful information.

    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.

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    Thank you Rose, I will make sure to mention that to the Dr. if he doesn't. I agree I don't think I'm getting her bladder empty. I am glad that she at least feels better. I was so happy to hear no UTI.
    Mary Grace

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