Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 21

Thread: UTI madness!

  1. #11
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,048
    Blog Entries
    1

    Default

    ((((((Tamie, Tyler, & Jerry)))))) ~

    Oh, I am so very sorry that you have been treated this poorly. Why didn't Tyler's urologist think of this option a long time ago? And he initiates it, when he is going to be out of town for a week? Didn't the urologist surmise that Tyler would be a challenging patient for a midline?

    A home health nurse should have visited first, done an intake on Tyler, assessed him and reported immediately back to the physician. If IM therapy was then determined to be the most efficient route for this antibiotic for Tyler, then a daily nursing schedule should have been set up for the 10 day course. You should not have to take Tyler to an Urgent Care, where he and you are being exposed to all kinds of germs, when he's already battling an intractable UTI.

    If you can keep a running journal of all of this, I will gladly help you to write a letter of complaint to this agency, and the urologist's boss, and anyone else involved in this nightmare for Tyler and you and Jerry.

    Just a thought ~ some of these newer antibiotics are pretty powerful, and they can affect the levels of seizure meds. Perhaps you might want to check out this antibiotic for any interactions or cautions.

    Many prayers are on their way that this antibiotic works to conquer the bacteria and brings healing and relief to dear, sweet Tyler.

    Praying for you and Jerry too of course ~ do take care of yourselves ~ please ~

    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. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,048
    Blog Entries
    1

    Default

    ((((((Tamie, Tyler & Jerry)))))) ~

    Just checking in and sending love and prayers. I pray that the antibiotic is working without any adverse side effects, and that you have a caring nurse tending to Tyler.

    Please update us 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.

  3. #13
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    318

    Default

    Tyler is on day 7 of his IM shots. The home health care nurse comes daily to administer the med. The doctor called when he got back from his trip and apologized profusely. He was livid that this happened and has taken it up with the hospital administrator. They are working on changing policy and procedure so this doesn't happen again. Tyler is handling the shots OK and his urine is finally clear. We will see how long it lasts. We have an appointment with the urologist on the 22nd to discuss Tyler's options. This ongoing infection and constantly being on antibiotics has to stop. Thanks for the prayers. They seem to be working.
    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."

  4. #14
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,048
    Blog Entries
    1

    Thumbs up

    ((((((Tamie, Tyler & Jerry)))))) ~

    Thank you for updating. I'm relieved to hear that Tyler is tolerating the antibiotic, and that his urine is clear. I'm praying that this antibiotic is the one to conquer the bacteria.

    Good to hear too that the urologist apologized and followed up with hospital administration, and that this is effecting change in their system. Once again, Tyler is a pioneer to help others. Perhaps it is a blessing in disguise, since he is able to receive the med via a daily shot versus a midline port. Much easier and safer all the way around.

    I will focus prayers that the urologist has good options for Tyler on the 22nd.

    How are you and Jerry holding up through all of this, Tamie? So much stress! Prayers going up for both of you too.

    Please keep us posted~

    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.

  5. #15
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    318

    Default

    Tyler made it one week off antibiotics before he brewed a new UTI. Took a sample in yesterday; tested positive. Now we wait until Friday to know what to do. Why can't this young man stay infection free?
    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. #16
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,048
    Blog Entries
    1

    Default

    ((((((Tamie, Tyler & Jerry)))))) ~

    I'm so very sorry to hear this. What did Tyler's urologist have to offer to you in the way of options at your 4/22 appointment?

    You all continue to be in my 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.

  7. #17
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    318

    Default

    The urology appointment was a complete bust. Other than apologizing profusely for the problems within his department, he offered nothing new in regards to treating Tyler's constant UTI's. His only suggestion was to stop cathing him. Even though everyone agrees that there is nothing we could be doing differently in technique, the urologist still believes that the cathing is the problem, not the stones. He really does not want to try and remove them and put Tyler through the misery of recovery. He, like so many other doctors, are pretty much afraid of treating Tyler. Guess he is worried about making things worse. The latest UTI didn't culture (odd, since he tested positive for the leukocytes). I think he has a sinus infection on top of it. We have an appointment Thursday morning to have Tyler checked out. Last night he sounded like he was trying to breath under water. Very fluidly, cold sweats, snort breathing, pain, but no temp. Seizures are awful as usual. Getting so very tired of all this. The back to back infections are very worrisome. Hows Jon doing these days?
    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."

  8. #18
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,048
    Blog Entries
    1

    Default

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

    Any chance that you can get a second opinion from another urologist? Being afraid to treat Tyler is a poor excuse for not treating him, in my opinion. Do these doctors say the same thing to their ALS patients, or their cancer patients, or ... you know what I mean, Tamie? Tyler deserves the very best care that any of these doctors can provide.

    And since Tyler has kidney stones, how about consulting a nephrologist? A kidney doctor might be more likely to want to treat the stones than a urologist.

    Throwing antibiotics into Tyler has not worked, and the more antibiotics he receives, the more resistant he will become to them. The source of the infection needs to be identified and removed. If that is kidney stones, then that's the route that needs to be taken.

    If the source is intermittent cathing, then what are the options to that? You can't just stop cathing Tyler, because he can't pee sufficiently on his own. His options could include an indwelling cath, like Jon has, a cecostomy, like Kathleen (Mary Grace's daughter) has, or a suprapubic cathether. The least invasive option, which doesn't require surgery, is the indwelling catheter.

    Jon's urologists and nurses all told us that an indwelling catheter produced a lower risk of infection than intermittent catheterization. With an indwelling cath, the bladder is draining continuously, so there is no build up or back up of urine in the bladder or kidneys. This has worked well for Jon for 4 years, and I wouldn't recommend it to you as an option, unless I was certain that it might help Tyler. It will also make life for you and Jerry easier, because you won't have to cath Tyler repeatedly every day. You'll just empty his drainage bag a couple of times a day. And with an indwelling cath, Tyler will be on home health service for monthly catheter changes by a nurse. So you will have back up, should Tyler need nursing care.

    When I discussed Tyler's situation with Jon's nurse the last time, she suggested that you try an indwelling catheter, if only for a month, to see how it works. She mentioned trauma to the urinary tract with intermittent cathing, which doesn't happen with an indwelling. The tissues are quite delicate in there, and that makes them more susceptible to bacteria.

    My suggestions are:

    1. Get a second opinion from another urologist.
    2. Consult a kidney doctor.
    3. Try an indwelling catheter for a month.
    and one more ...
    4. Cranberry juice to balance the pH in Tyler's bladder

    Prayers going up for healing on all fronts, including Tyler's sinus infection. Bless him, and bless you and Jerry. I pray that you find doctors to treat Tyler and that you find the answers to all of his issues. And I pray for all of you to be able to rest and sleep.

    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
    Join Date
    May 2008
    Posts
    808

    Default

    So sorry to hear he's sill not well. Kathleen has an appendicovesicostomy. Rose mentioned cecostomy but that's her bowel surgery. It has worke amazingly well for her. She has never had an infection. Praying you can get answers maybe another opinion as Rose mentioned. It's so exhausting when they don't feel well and you feel so helpless.
    Mary Grace

  10. #20
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    318

    Default

    Thanks guys. This has all been exhausting and now Tyler has a nasty cold/sinus infection and we got the "quality of Life" vs not treating yet another infection speech. Surprised us to no end. Haven't heard that conversation in years. New doctor suggested not treating Tyler's latest infection and letting nature take its course is an option for us if we feel Tyler has suffered enough. I have no idea how letting a loved one suffer from what would become a massive untreated infection is a humane way of letting nature take its course. REALLY? Kinda ruined my whole day. Guess we won't be going back and seeing this guy again.
    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."

Page 2 of 3 FirstFirst 123 LastLast

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.