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Thursday, June 13, 2013

Our Plan of Action

Today Madi had her urodynamics test and we saw Dr. Zuniga again.  We got a few more answers to the Madi urology mystery and now have a plan of action.  Madi's bladder starts to become high-pressure with very little urine in it.  Although her bladder holds a decent amount, she has a lot of pressure in it most of the time.  Cathing more often won't help, because we would basically have to cath every 30 minutes or something crazy like that to keep her pressure low enough.  She doesn't leak, because her muscles work well, but this actually works against her because that means when the pressure gets high, there is no where for the urine to go and it doesn't leak out, so it goes back up.  This is also explains her kidney damage on the side the reflux is on.   Because of this, the bulking agent to fix the reflux won't actually solve her problem.  Even if we did that surgery, she'd still have the high-pressure bladder.  He said the two options we have are either the vesicostomy or an augmentation (they could do the mitrofanoff surgery then as well so she could cath through the belly button).  The vesicostomy would take away the pressure and reflux (hopefully) for now, but it's not a long-term solution.  It is generally a pretty easy surgery with not many negative side effects.  The augmentation is a permanent solution, however, it can't be undone.   It also carries a little more risk as there is more risk for stones, etc..., once it's done.  Usually the augmentation surgery is done when a kiddos is a little older than Madi, and he has never done the surgery in a child Madi's age (4), but he would be open to doing it if it's what we wanted.

David and I have prayed about this decision and both feel that starting with a vesicostomy is the way to go for now.  Unfortunately, Madi will have to go back in to diapers (right now she uses reusable cloth trainers) or pull-ups (we will most likely get pull-ups, and will try to find some cloth ones that still fit her or try to find some cloth ones that can be made larger to fit her), but we feel that choosing this surgery, until she is a little older and can decide for herself, is what is the best for her.  She will likely have the vesicostomy for a few years, and then we will go from there.  Hopefully there will be some better surgery options then, but if not, that's ok to, because at least Madi can help be part of the decision making process. 

The surgery scheduling people from the hospital will be calling us within a few days to schedule Ramya's dye study and Madi's surgery.  They also still want to do the dye study to examine Madi's kidney function, so we will see if they can do this while we are in-patient for the vesicostomy surgery.  The nurse said she thinks the surgery will be July 10th, but she's not sure if the hospital has that date open, so at this point we aren't really sure what the surgery date will be.  Dr. Zuinga thinks we will only have to be in the hospital for a day or so after the surgery, so that's not too bad.

Thanks for praying for us and our sweet little gal, and please keep her upcoming surgery in your prayers as well!  We know God has a plan for her to give her HOPE and a FUTURE and we are so thankful that these options are available to help her little body!

 

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