Page 1 of 7 123456 ... LastLast
Results 1 to 10 of 67

Thread: Tyler Update

  1. #1
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    318

    Default Tyler Update

    Took Tyler to the Urologist yesterday. He isn't convinced that the AD is being triggered by the constant UTI's (no big surprise there), but agreed to put in an indwelling foley for a week to see if constantly draining the bladder will help. We are to continue with the antispasmodic for the week as well. Tyler had an absolutely horrendous day yesterday and we were up from 3:00 a.m. on trying to control the pain issues. This has to help or we are running out of options. Saw the new Primary Care doctor today and this one is more than willing to work with us and coordinate all the specialties in Tyler's best interest in addressing the AD. Yea. About time. Told him we needed a ring master to keep our three ringed circus under control. Will contact him weekly with updates. Just need to see Tyler pain free for at least one day.
    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
    Join Date
    Oct 2006
    Posts
    3,043
    Blog Entries
    1

    Default

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

    Why is Tyler's Urologist skeptical that Tyler's AD is triggered by UTIs and other bladder issues? I've only done minimal research on the internet about AD, and all of the sites indicate that UTIs and distended bladders are common causes of AD. Like this one:

    http://www.healthline.com/health/aut...exia#Overview1

    I'm not a doctor. But I can read.

    Is there any possibility that you could see a different Urologist? Like your new PCP, maybe you could find a Urologist, who understands the very strong connection between bladder and urinary tract issues and AD.

    I'm glad that Tyler has an indwelling now. No work for you, except to empty the drainage bag a couple of times/day. I recommend you use a leg band to keep it in place, and tape the catheter onto his thigh an inch or so below his penis. Leave a little slack. You don't want any pulling to occur, when you're moving, turning, transferring him.

    You'll likely see sediment, or what I call the white fluffy stuff. That's normal with an indwelling. If he has any bleeding, you'll probably need a home health nurse to visit to irrigate the catheter, unless you've been shown how to do that. Same thing if he has any leaking.

    It's a shame that Tyler's urologist didn't recognize and correlate Tyler's symptoms long before now, and place the indwelling catheter. I'm praying that this will work to reduce Tyler's pain and AD symptoms. I pray for immediate success.

    I'm so happy that you have a cooperative and caring new PCP to manage Tyler's care needs. You need an advocate on your side willing to go to bat for you. I hope that Tyler gets everything he needs now.

    You must be utterly exhausted. I'm praying for rest for you and Jerry too.

    Please keep us updated, Tamie.

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

    Default

    Thanks Rose. Yes, sleep is at a premium here. Was up all night repositioning Tyler's head so he could breath without struggling. His already floppy airway is getting worse. Wonder if the antispasm med is causing that. Always something with this young man. On the up side, there have been fewer shrieking episodes since placing the indwelling cath. Thats been great. We only have a weeks trial with the indwelling, so not sure where we are going from there. The doctor said an indwelling cath can stay in place for a month before needing to be replaced. It looks so uncomfortable and it is a pain to move Tyler with a bag hanging. We do have the velcro straps but my husband only took a bedside bag, not a leg bag. So much for letting him choose accessories. The constant draining seems to be helping the AD, so no real complaints. Just need to get the right equipment. Wondering if the superpubic cath is the better alternative. Less chance of infection and nothing constantly up and irritating the penis. At least we seem to be heading in the right direction.

    Most doctors look at the diagnosis, prognosis, the overall decline and severity of Tyler's disabilities and are less than enthusiastic about giving their all to treating Tyler. We just want to keep him as comfortable as possible for as long as Tyler graces this earth. We are not looking for a cure. Gave that up years ago. It was nice to hear the PC doc is willing to coordinate with the specialists and he is the one we will primarily be dealing with. Two PC's ago didn't want to deal with the chronic UTI's, which is when we got stuck with this urologist (finally fired both of these doctors). We see him so seldom I haven't bothered to fire him. Need him for prescriptions and DME supplies, and to treat the infections. He has little, to no, experience in AD, which is where the PC will come in handy. The PC sees Tyler's dx as challenging and is willing to do what is necessary to help him and us. He looked up Tyler's syndrome, looked at his records, researched AD before we even brought Tyler to meet him this week. He is also our PC doc and has never failed to ask about Tyler every time either my husband or I had an appointment with him. Tyler's own doctors barely ask about him. I think we finally have a good match.
    Last edited by Tamie; 04-24-2016 at 07:36 AM.
    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. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,043
    Blog Entries
    1

    Default

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

    This is great news that the indwelling catheter is helping to relieve Tyler of the shrieking episodes, which means a reduction in pain. I am rejoicing with this news.

    About the indwelling catheter:

    Less chance of introducing infection with an indwelling than with intermittent catheterization. Jon has had an indwelling catheter for over 5 years now, and he has had very few UTIs.

    Change of catheter is done once every 30 days (Jon will have his changed next Weds. by his new nurse). You need home health nursing for this, rather than to take Tyler to a urologist or the hospital to have it done. It only takes a few minutes, and it can be done at bedside easily. The home health nurse will also take Tyler's vitals and listen to his chest and heart, and s/he can recommend specialists and treatments, therapists, you name it. S/he can communicate directly with Tyler's new PCP and coordinate his needs. S/he can get you the supplies that you need for Tyler, including leg bags.

    An indwelling catheter means less work for you and Jerry than intermittent cathing, so that's a plus for you as caregivers.

    Jon doesn't complain of pain with an indwelling catheter, and after a period of time, it isn't noticeable. Jon's former nurse told us that her patients have always felt more comfortable with an indwelling than with cathing 4 or 6 times a day. And clearly, if Tyler isn't having the shrieking episodes, he is feeling relieved and in less pain.

    I understand your concerns, Tamie. I had them too. But then I realized that if Jon can tolerate a tube in his gut for feeding, then he can tolerate a tube in his penis to prevent UTIs and septic infections from not peeing. And he has. And Tyler will too.

    The one week trial is just to see whether it works, helps, and Tyler can manage with the indwelling catheter. So far, this seems to be the case, so I'd stay with the indwelling cath in your situation.

    Your PCP sounds wonderful, and just the doctor you need to care for Tyler. Perhaps he can refer you to another urologist to discuss the supra pubic catheter. That may be the long term goal, but it does require some sort of surgery, so you might want to research it (if you haven't already) before you pursue it. I just remember that it wasn't an option for Jon, but I can't recall now why it wasn't.

    If the catheter is draining Tyler's bladder properly, perhaps you could consider cutting back on the antispasmodic drug to see if that helps with Tyler's breathing issues. If you think this drug is interfering with Tyler's respiratory function, you might want to mention that to his PC. You could try not giving it to him for one day to see whether it helps. If he has spasms, you always have the option of giving him the medication.

    Praying for continued improvement and for rest and sleep for all of 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.

  5. #5
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,212
    Blog Entries
    17

    Default

    I have never taken muscle relaxers even though I'v been offered them many times. I think it is possible for a muscle relaxer to effect the airway. Glad Tyler is getting a bit of relief. I don't know squat about catheters but I imagine they look worse than they feel like Rose is saying.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  6. #6
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    318

    Default

    We are going to take the indwelling catheter out. Tyler's bleeding around the tip and down the external tubing. Doctor wants to remove it and instead, straight cath him 4x a day. Trying to see which is the better choice for him. When they put the cath in, they took another urine sample, and of course, Tyler has another UTI. It is endless. This time the bacteria is one we haven't seen before. Apparently common in troops coming back from Afganistan. Totally weird. Also found in the severely ill in the ICU. Neither of which applies to Tyler. He's on Septra for the next 7 days. Was up all night repositioning Tyler's head to open his airway. This morning he had an hour long shrieking episode. So much for getting better.
    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."

  7. #7
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,212
    Blog Entries
    17

    Default

    Is it possible the infection is causing the bleeding and not the catheter? I'm so sorry about the infection and bleeding.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  8. #8
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    318

    Default

    We were only going to keep the catheter in for a week to see if it made a difference in Tyler's AD symptoms. We thought we saw some improvements, but then the episodes resumed. Last night Tyler was miserable for hours. Built up so many secretions from shrieking, we had to suction him. One step forward, two steps back. The bleeding was from irritation from the foley. Apparently not uncommon. So back to square one.
    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."

  9. #9
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,043
    Blog Entries
    1

    Default

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

    Bleeding is common with an indwelling cath, but it is usually not anything of great concern, unless the blood is frank and copious. Jon had his cath changed yesterday, and this was only the second time that his new nurse has done it. There was a little blood, likely generated by her pulling out the cath slowly (usually it comes out on its own, while she is taking vitals). It subsided within a half hour.

    In the past, when Jon has had bleeding of any volume or length of time, Jim and I irrigated his catheter with sterile saline in a 60 cc syringe. Depending upon the amount of blood, we may irrigate a couple of times.

    Years ago, a very inept nurse injured Jon when she inserted his cath. He bled profusely, and we ended up in the ER. There, the ER doc demonstrated to us how to irrigate his catheter using 200 cc at a time, then draining, repeat, repeat, etc. until the return is clear or has less blood. It took the doctor about an hour. I remember Jon saying, "Saturday Night Live" to the doc, indicating that he wanted to get home to watch it. For about 3 more days, Jim and I irrigated Jon's cath at home as we'd be trained to do by the ER doc.

    Initially, I thought the doc would want to remove and replace Jon's catheter, but he said adamantly that that would only further aggravate the injury and increase bleeding.

    Sometimes Jon has a bit of blood from the catheter being tugged during turning, or if he has his hand near it. Always a small amount and usually not lasting long.

    I'm confused a little by the choice to remove the catheter, if Tyler was showing some or any improvements. When you were straight cathing him, he was having all of the issues associated with AD, with no relief. Is that right? And, I gather that the cath has been removed, and you're straight cathing now?

    What happened to the possibility of the supra pubic catheter? Is that still a viable option?

    And, is there any chance you can get another Urologist for a second opinion?

    Praying for you all and sending healing energy ~

    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.

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

    Default

    We knew the cath would only be indwelling for a week. That was determined by the Urologist. Keep in mind that he isn't sure the cathing is part of the AD problem, so doing the indwelling short term was his idea. We are to cath Tyler 4 times a day and compare the outcome to see which is the most viable option for him. The Urologist is not thrilled with doing any type of surgery on Tyler because of his constant seizures so he isn't pushing the supra pubic cath idea, though I think for Tyler's overall comfort, that may be a better option than the indwelling. Tyler had two more shrieking episodes yesterday. We had Tyler weighed in the Urologists office and he is back down to 113 lbs according to their scale. We are taking him into the nurses clinic this morning to have them recheck the weight. If he truly is back to 113 lbs., he has lost 7 lbs in the past six weeks. Thats not good. He is taking in the same amount of nutrients, but with the profuse sweating he has been doing, he may be losing water weight. We are going to have to try and compensate for that and bring his weight back up 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 1 of 7 123456 ... LastLast

Similar Threads

  1. Tyler has another UTI
    By Tamie in forum Child Neurology
    Replies: 8
    Last Post: 11-22-2014, 06:21 PM
  2. Tyler's in the Hospital
    By Tamie in forum Child Neurology
    Replies: 30
    Last Post: 11-04-2014, 06:32 PM
  3. Tyler has another UTI
    By Tamie in forum Child Neurology
    Replies: 8
    Last Post: 05-15-2014, 06:39 PM
  4. Tyler's birthday!
    By Tamie in forum Child Neurology
    Replies: 6
    Last Post: 12-09-2012, 05:34 AM
  5. Happy Birthday Tyler!
    By Tamie in forum Child Neurology
    Replies: 4
    Last Post: 12-07-2011, 09:13 PM

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.