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Thread: UTI madness!

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    Default UTI madness!

    Here we go again! The UTI Tyler had a few weeks ago didn't die from the Cipro. It has now become even more drug resistant. We are waiting to hear from the infusion department. They will put a midline port into Tyler and he will have to have an IV infusion of, one of two, antibiotics that may kill the Klebiella infection. They say the infection is an ESBL producer. Highly drug resistant. I believe a nurse will come to the house daily for the next ten days to administer the dose. This needs to stop!

    Just got a call from the infusion department. We will have to take Tyler to radiology and sedate him for the initial infusion. He has to lay very still for over an hour (not happening). They will show me how to administer the infusion and we will then do the infusions at home. I think the drug will be Ertopenem (depending on how the culture responds tonight). There is only one other drug, if this one doesn't work. Here's hoping. Prayers would be appreciated.
    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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    ((((((Tamie & Tyler)))))) ~

    Prayers are on their way and will continue.

    Is Tyler getting a PICC Line or a Central Line? Both require the patient to remain as still as possible for insertion. Sterility is a major priority in the procedure. With the PICC line, an x-ray is taken after insertion to ensure proper placement, before any fluids/meds can be given through the line. Probably the same for Central Lines, but my boys have had PICC lines for the last 15 years.

    PICC Line:

    http://en.wikipedia.org/wiki/Periphe...ntral_catheter

    Central Line:

    http://en.wikipedia.org/wiki/Central_venous_catheter

    The site should be covered by a clear dressing, with the date handwritten on it for changing. Usually that dressing is changed once a week, by a nurse. I recommend that you ask for a mesh sleeve to go over the dressing to prevent Tyler from pulling it out, accidentally or purposefully. (Jon pulled his purposefully, because it annoyed him.) It's just an extra precaution that we found beneficial.

    Home infusion for us involved a compact computerized unit, which we hung on Jon's IV pole. Jon's nurse instructed us on how to program it, how to flush the line with saline, how to monitor the infusion, etc. I took notes, and I recommend doing that, so that you have it for reference.

    The nursing agency pharmacy provided us with everything we needed, including batteries for the computerized unit, which we changed every day. Pre-filled syringes of saline. Bags of meds, which we kept in the refrigerator. Everything. We even still have a box of leftover stuff in the garage.

    Jon's nurse visited twice after her first day of instruction in a 6 day course of antibiotics. Once was to check Jon's line, because he'd tugged on it. She measured it and called the hospital to make sure that it was still in place. The nurse has to remove the line very carefully, when the course of the infusion is finished, and blood clotting is an important consideration.

    If the nurse doesn't automatically take Tyler's vitals, just ask her to do so. Vitals can tell the tale of tolerance for a drug.

    Many prayers that this antibiotic effectively kicks out the Klebiella for good, and that Tyler experiences no adverse side effects.

    How are Tyler's seizures? Are you still giving him the cannabis oil?

    Please keep us updated. Let us know how the line placement went, and how you're doing with administering the antibiotic at home.

    Thinking of you all ~

    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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    Hi Rose. They said they are putting a midline port in because it is less invasive. We'll see what they say when they actually see Tyler. He will not lay still for an hour and the contractures in his arms are going to be a problem. I have to take a two hour class to be trained on infusing. Should be interesting.

    Tyler's seizures are just as nasty as ever. We stopped the CBD oil last month because every increase in dose brought an increase in seizures. No matter what we did, it just didn't work. The Keto diet was a bust as well. That also increased the seizures. He just doesn't seem to catch any breaks.

    I'll update when I know more. Just got home from South Carolina/Georgia on Saturday (Jerry stayed with Tyler here at home). The trip was a disaster from start to finish. I need a vacation to rest up from my vacation. Nothing like spending time with four sick kids (influenza B) in a remote cabin in the middle of nowhere. Now one of them has Mono, passed out on our last day in Georgia, had his first every seizure (this was one of Tyler's brothers) and we spent the day in the ER. Yeah!
    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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    ((((((Tamie)))))) ~

    A Mid Line is similar to a PICC line, but it is shorter. The procedure is probably very similar. Wow! A 2 hour infusion class! We had a 1/2 hour instruction by Jon's nurse. You will be well trained at the end of that class.

    I'm so sorry that the CBD oil didn't work for Tyler. I was so hoping it would be successful. My heart just breaks for him, and for you and Jerry.

    The point of your vacation was to get away from care giving, and then you end up caring for your 4 grandchildren with the flu, and one with mono and a seizure. I'm sorry! I can imagine how much you needed that break, that respite. I wish you could escape to Cat Island with Donna and her husband. You and Jerry need a getaway.

    I will step up my prayers for all of you. Please remember to take good care of yourself, Tamie, in the midst of all of these crises.

    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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    Hi Tamie,
    I'm so sorry that Tyler and you are still struggling so hard with this awful problem. Prayers going up. xo 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


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    Thanks Donna & Rose. We are still waiting to hear what is going to happen. I know they were going to use one of the antibiotics available on the culture last night to see if it would kill the infection. So far, we haven't heard a thing, so have no idea what is going on. Tyler had a bad night. Heard him cry for the first time in 10 years. Broke my heart. I didn't think he knew how to any more. Will update when I know more. Thanks for your thoughts and prayers. They mean a lot.
    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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    ((((((Tamie & Tyler & Jerry)))))) ~

    My heart breaks with yours that Tyler cried. Bless him. He has suffered through so much. And you and Jerry have suffered with him. I just want to wrap my arms around all of you. Praying fervently that you hear very soon that they have identified an effective antibiotic to kill this bacteria.

    Know that you are not traveling alone on this journey. We are all here for 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.

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

    Just checking in, hoping for an update with good news.

    Jon's nurse is visiting tomorrow to change his catheter and trache, so I will ask her opinion/advice about Tyler's situation. She has many years of experience, and she treats palliative and hospice patients. She has seen and done it all. She is also an expert in infusion therapy, IVs and PICC lines. That's her specialty in the agency. Wish you could just suddenly move up here, then she could help you. And so could I.

    Prayers are continuing for you all ~

    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)))))) ~

    I spoke to Jon's nurse today about Tyler's situation. She is familiar with the antibiotic, Ertropenem, and with Mid Line catheters. She said the antibiotic is actually a combination of drugs mixed together. And she explained, using Jon as her subject, where the Mid Line goes as opposed to the PICC/Central Line. It is much less invasive, and it is meant for temporary infusion.

    She felt strongly that you should have nursing visits, while Tyler is receiving this infusion, regardless of your level of training. She suggested that I encourage you to ensure that nursing assistance is accessible to you for Tyler during the infusion period.

    She also said that a Mid Line catheter is easier to dislodge than a PICC or Central Line, simply because it is shorter. So, do ask for a mesh sleeve to cover the injection site of the Mid Line to prevent it from dislodging.

    Prayers are continuing ~

    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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    What a ridiculous week. The infusion unit refused to place the midline port because Tyler is incapable of holding still for the procedure. They sent the file to radiology. Radiology told them they didn't do sedation and sent the file back to infusion. Both units let the ball drop. Tyler's urologist was out of town for the week, so we had no one to contact. His nurse called a few times to see what the problem was and sent messages to the doctor and the hospital administration relating our displeasure with the process. What a fiasco. They finally decided to do IM shots of the antibiotic and more miscommunication resulted. Finally got Tyler's first shot Friday afternoon, the second in Urgent Care yesterday and the third will also be in Urgent Care today. Starting tomorrow, we are supposed to have a Home Health Care nurse come every day to administer the shot here. Poor kid deserves better than this. Seizures are awful, but at least he seems more comfortable. Sure will be glad when the 10 days are up.
    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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