Kidney/Bladder PUV
Just Believe - 09:01am May 28, 2009 ESTHi I have a son who was born with PUV. We have been very lucky and he has done very well for himself since leaving the NICU almost two years ago! Unfortunately, the obstruction in his urethra caused damage to both his kidneys and bladder. We are currently trying to keep his bladder pressures down to help the one good working kidney last as long as possible! We have been trying to manage this through botox injections (this surgery has been preformed twice) but there doesn't seem to be much published research on this method? We were recently presented with a couple options to consider for his care: major multiple surgeries to make his bladder bigger, stay the course we are on or do nothing just observe? Does anyone out there have a son who was born with PUV? What courses of medical action have you taken for him? Can he use the bathroom on his own and actually pee? I would welcome the opportunity to chat with you over email so we can exchange information and learn from one another...Thank you for any input!
Just Believe
- Jul 15, 2009 12:02 pm
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Hi Karen. These last few weeks of summer have been a little crazy with family visiting etc. so sorry for not logging on and responding sooner. It's nice to hear from you. I hope we can learn from each other’s experiences and knowledge. Your little guy sounds amazing and very strong! My son Mason also has the spiral curled ueters and grade V reflux in both kidneys. We are currently treating his bladder with botox injections to relax the bladder wall muscles and keep his high pressures down. The reflux has not improved at all (sometimes there is a chance) but it seems to be keeping his one good kidney happy so we opted to stay the course for now. He goes in for his 4th botox surgery this fall.
In regards to the bladder augmentation surgery...I'm not sure if that is something they have to do and strongly recommend at the time of a kidney transplant or not? What does his doctor say about other options such as these botox injections into the bladder? Maybe it is something you can consider for him as well before having to move forward with the augment? Is there a time that might be good for you to chat online if you’re interested?
Believe!!! Katie
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Just Believe
- Jul 15, 2009 12:18 pm
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Hey Karen, one other thing that I didn't mention. The other way we are trying to help my son’s bladder and keep the pressure off his kidney is by catheterizing him every four hours during the day. (He leaks or pees during the night so no foley right now. I'm not sure which it is until he gets a little older? He just turned two on July 5th!) I know your son would have to do the cath after the augmentation surgery...maybe it is something they might consider letting you try with him before doing the augment? This is assuming they are talking about closing up the vesicostomy? Again I don't know all the details of your son's situation but thought I would pass it along.
You’re in my thoughts! Kt
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