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Thread: Tyler has another UTI

  1. #1
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    Default Tyler has another UTI

    Got a call yesterday from the on-call urologist. He says Tyler is becoming seriously drug resistant. They tried several antibiotics on the latest infection and had a very difficult time finding one that would kill it. They even tried IV antibiotics and one that never fails (none of them worked). Scary thought if this gets any worse. Started Bactrim today and Tyler is already miserable on it. Seizing and moaning. Gave him Motrin and Valium to try and calm him. Five days of this isn't going to be fun.
    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. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tamie & Tyler)))))) ~

    Oh, I'm so sorry Tyler has another UTI! And antibiotic resistance! You all seriously need a break here with something, anything. I'm praying that the Bactrim knocks it out. Jon has issues with Bactrim too. You have my empathy.

    With indwelling and intermittent catheters, bacteria will always be present. Our docs tell us that unless Jon has overt symptoms, they prefer not to treat with antibiotics. Overt symptoms: dark urine (not just concentrated), reduction in output (significant), painful bladder/swelling, strong odor to urine, fever, nausea, loopiness.

    When Jon first got his indwelling catheter, he had a couple of UA's, which led the docs to prescribe Bactrim, although Jon didn't have overt symptoms. Once it became obvious that Jon was colonized for pseudomonas, the decision was made to not treat the bacteria. We don't even do UA's anymore.

    Jon has a special catheter with a silver tip. The silver battles pseudomonas specifically, and other bacteria generally.

    Having dealt with Jon's indwelling cath now for 3 years, I can say that I would never want to do intermittent cathing. Our urologists and our home health nurse advised us that intermittent cathing leads to more infections than an indwelling catheter. Both the docs and our nurse agreed that intermittent cathing was a temporary solution, and if cathing is a life-long process, an indwelling catheter is the best option.

    The indwelling cath is a closed system, and with the exception of changing the drainage bag after 15 days and the catheter every 30 days, it remains in place and undisturbed. Periodically, we have to flush the cath with saline, which is a simple process and relatively clean, using lots of alcohol wipes.

    I know that you aren't fond of the idea of an indwelling, but I just wanted to toss it out there for your consideration by giving our experience. Because of Jon's enlarged prostate, he has no choice but a catheter for the rest of his life. He has learned to tolerate it well, and it serves its purpose efficiently. Praise God, and may it continue to be so, Jon hasn't had a UTI since his first months with his catheter, and then he was recovering from a serious illness after 45 days in the hospital.

    An indwelling cath also frees up your time. There's really nothing to do but check to make sure it's in place and the urine output, and emptying the bag twice a day. Less work for you. A home health nurse would be assigned to change Tyler's cath every month. That puts you on service for as long as he has a cath. With that you get the benefit of monthly vital sign checks, and the nurse addressing any other health concerns, as well as coordinating his health needs, specialists, etc.

    I wouldn't trade the benefits of home health nursing for anything. Our nurse is a member of our family now, and we adore her and she loves us. If Jon has any problems, she's here for him. She counsels us by phone, email. She draws Jon's blood for tests, takes UA's when needed, taught us how to use IV antibiotics at home (Jon had a PICC line upon hospital release). Changes his catheter, trache. Checks any wounds, problems with the colostomy.

    If you find the right nursing agency and the right nurse, you will be happy to have the nurse in your orbit. If Tyler is on Medi-Cal, it will cover the home health costs.

    It probably sounds like I'm trying to talk you into an indwelling cath and home health nursing. That's because I am. I balked at every change that accompanied my boys' medical issues. Name it and I hesistated ~ G tube, colostomy, trache, catheter. But every one of those changes has saved Jon's life multiple times. Having a nurse visit used to make me nervous, worried, but once we found our gem, we look forward to her visits. We learn so much from her, and she has Jon's interests as her number one priority.

    You've known me a long time, dear friend, and you know that I would only offer this experience and these suggestions out of my love for you and your sweet Tyler. I just wanted to share the benefits we've seen through the cath and the nursing for you to ponder.

    Another thought ~ Is Tyler able to tolerate cranberry juice through his G Tube? This helps to keep a normal pH balance in the bladder, which reduces bacteria and infections. We gave Jon cranberry juice daily, until we discovered that he couldn't tolerate real food or juices. But if Tyler can handle it, this is a healthy option.

    Two of my friends, one with MS-like symptoms, and one with overactive bladder, have an Inter-Stim device implanted in them. They find it helpful, but I'm not sure whether Tyler would be a candidate for this option. Jon is not.

    Healing prayers for Tyler that he will beat this infection with the Bactrim and tolerate the side effects in the process. I continue to pray that Tyler is able to acquire the CBD for his seizures. And healing prayers for you, Tamie, that you are getting the rest, sleep, and nutrition you need.

    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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    Distinguished Community Member andromeda31's Avatar
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    Hi,

    I am sorry to hear that he is dealing with infection....how scary to hear there might not be additional options. Praying that what he is taking will get him better....

    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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    ((((((Tamie & Tyler)))))) ~

    You've been in my thoughts and prayers daily. By now, I hope the Bactrim is finished and that Tyler is feeling better and seizing much less. Bless your hearts, I'm sure you're all exhausted.

    Please forgive me if I sounded pushy in my response above. I pray that you know that my intention is only to share our experience with the goal of informing and edifying.

    You and I go way back, even before I joined CN, so you know that I tend to "share strongly." I hope you also know that I "support strongly."

    Please let us know how Tyler and you are.

    Lots of love and many healing prayers coming your way ~

    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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    It's OK Rose. You always have great information and I like hearing what you have to say. It helps to bounce around ideas with someone who truly understands. Tyler finished the Bactrim on Friday. What a miserable week for him (and us). Unfortunately he still isn't feeling well and last night was awful. We took another sample in this morning and just got the report back. The Leukocyte Esterase test showed white blood cells in the sample and his WBC is over 25,000. Not a great thing to hear. We have to wait another three days to see what cultures and what will kill it this time. His now has a very fluidy cough which could be a side effect of the Bactrim. Just one more thing to watch for. Seizures have been just nasty. This young man needs a break from the constant seizures and pain. Thanks for your thoughts and prayers. They mean a lot.
    Last edited by Tamie; 05-11-2014 at 03:39 PM.
    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."

  6. #6
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    ((((((Tamie & Tyler)))))) ~

    Oh dear...yes, Tyler and you and your husband all need a break. My heart just goes out to you.

    So all that time on Bactrim, with all of those seizures only to find out his WBC is off the charts. I'm so so sorry, Tamie. How absolutely frustrating.

    The fluidy cough could be from Bactrim, or it could be from seizing so much, or possibly an upper respiratory infection, as that can sometimes accompany a gnarly UTI. Does Tyler's doctor know about the cough?

    Oh, the search for an antibiotic really wears you out. Wish I could hug you through the computer!

    And, who do we write to, lobby, beg, urge to get CBD for Tyler? I just want him to have a chance to try it, and if it works for him, oh praise God and thank you government! I will write on Tyler's behalf, just direct me to the right decision makers.

    I'm grateful that you "get me," and that you know that when something works for my son, I enthusiastically endorse that something. And I know that what works well for one doesn't always mean it works well for another. I just feel that sharing what I know is part of my purpose on Earth, part of my sons' purpose on Earth, so I tend to over-share.

    Holding you and Tyler close in prayer, praying for the right antibiotic to knock out this infection, one which doesn't carry adverse side effects, praying for a cessation of seizures, for healing and strength, for calm and peace.

    Please keep us updated, Tamie.

    Surrounding you with love ~

    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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    Many prayers for you and Tyler. We cath. Kathleen through an appendicovesicostomy. She does have bacteria when they test her urine but it hasn't caused any issues. It's a very scary thing to hear that there may be no options for treament.
    Mary Grace

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

    Prayers continuing ...

    How is Tyler feeling now? Please keep us posted when you can.

    Praying for relief, an antibiotic, which will work effectively, with no side effects, and for healing and strength ~

    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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    ((((((Tamie & Tyler)))))) ~

    Continuing prayers ~

    Are you being affected by the fires? I'm worried about you all. Please check in whenever you can.

    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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