Chive On For Trent - Interstim Surgery

Since approximately age 4, our son has been having some problems with a sort of incontinence. At first, we thought it was his age, and he was just "too busy" to stop playing and use the restroom on time. We soon after realized this was an issue that was beyond his control. After seeing our Pediatric Urologist here in Tulsa (There is only one in Oklahoma who travels back and forth from Tulsa to OKC), we started the normal battery of tests and medications. For years we have went back and forth with toilet habits, changing diet to exclude things, medications and so on. The problem has gotten worse the older he has gotten. He wears long tshirts to hide the embarassing spot in his pants by then end of the day, he doesn't want to play sports, and he refuses to wear blue jeans because they "show the spot" too much. In December he had a Urodynamic Study which showed that he has a bladder the normal size of a 10 year old, but when is starts to fill, it only fills to what a 2 year old bladder would hold, and then is starts to spasm, which causes leaking beyond his control. The pressures in his bladder are such that to leave this problem not corrected, will eventually start forcing the urine back up to his kidneys, which we all know will cause way worse problems. I have watched this affect my son and his personality, the things he wants to do, participate in, and his ability to act like a normal kid his age. I have watched this problem affect him at school, and he is terrified that someone will find out about his problem. When the Interstim surgery was discussed with us as a last ditch effort to fix his problem, the Dr was excited, because this is a bladder defribilator. It will go at the base of his sacral nerve and tell his brain and bladder what to do, when to do it, and how to do it properly. The success rate is super high, and most often when used in children can not only help them immediately, but can actually help to reset the pathways in the brain so it can learn to do it on it's own without the defibrilator. This has been the moxt exciting development in 6 years, and something we all think could help our son. Our insurance company has flat denied the service, since it is not often used in kids under 16. The Interstim hardware alone can range in the 30-40k area, in addition to surgery, hospital, physician fees etc. When he was born, he had several unrelated surgeries, and cost us over 90k in his first 28 days of life. We have lost a home, lost cars, and filed bankruptcy due to those issues 10 years ago. We don't want to have to do anything like that again, but I would do it 100+ times over for my son. Any help for our son and our family is greatly appreaciated.
Thank you.

Sincerely,

Shelley Hayes (aka - Mom)

Donations

  • Melissa Taylor 
    • $10 
    • 66 mos
  • Melissa Taylor 
    • $10 
    • 67 mos
  • Melissa Taylor 
    • $10 
    • 68 mos
  • Melissa Taylor 
    • $10 
    • 69 mos
  • Melissa Taylor 
    • $10 
    • 70 mos
See all

Organizer

Shelley Hayes 
Organizer
Collinsville, OK
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