Sunday, October 5, 2008

Decisions

I know this is blurry, but you can see the marks left by the foley cath on his belly. Those are old blisters.


With a child like Ben comes many decisions and challenges. The latest involves his bladder. Ben has what is called a "neurogenic bladder". His brain does not communicate properly with his bladder resulting in "urine retention" and other issues. Because of this his urologist started him on a medication called "ditropan". This helps relax the muscle allowing him to pee as needed. We also cath him at night. The "foley cathetars" that stay in all night are made of silicone. They used to be made of latex, but most kids that need to be cathed are "latex allergic" and so silicone seems to be one of the materials that are safe. My child happens to be the exception. For over a year now Ben has had a lot of issues regarding these caths. His skin blisters if the cath comes in contact with his belly, and he bleeds and has some discharge from having contact on the inside. The up side of all of this is that his bladder looks almost normal via scan after being on the meds and being cathed. His life seems more comfortable. (except for the allergic reaction to the caths) We visited an allergist the other day and his recommedation was to get "patch testing" although he feels like the blistering of the skin is evidence enough that he is allergic. He also feels like we should stop using the caths. The problem? We have not been able to find any company out there that make "latex free" or "silicone free" foley cathetars. He needs to be cathed in order to keep his kidneys safe and his life more comfortable. The urologist talked to me about a possible procedure that might do away with having to be cathed at all. He would go in and cut the muscle that holds the pee in your bladder. If he did this then Ben would just slowly leak urine into his diaper. Sounds great, right? Maybe. The down side to this is that he might have irritation from being exposed to urine 24/7. His skin is so sensitive that there is a chance his skin could break down causing major problems. The "non-permanent" solution would be to inject botox into that muscle which would paralyze it causing the same effect. (slowly leaking urine into his diaper) If we went with this (which we will probably atleast try) then we will know if his skin will have issues or not. The affect of the botox lasts anywhere from 6 weeks to 6 months. Depending on how his skin looks as a result of the botox will help us decide what we need to do.

5 comments:

ellen said...

I'll be ticked if Ben gets botox before me.

DainBramage1991 said...

I'm surprised that there aren't any vinyl (pvc) caths available. I think that someone could probably create one out of sterile vinyl tubing (IV tubing for example) if they had access to the right materials.
Gosh, it seems like Ben (and the rest of the Ortons) just can't seem to get a break some times. Hope you find a good solution.

Becky said...

Too late Ellen, he's had botox about 5 times already. He'll have his youthful look FOREVER!:)

Jenny said...

You guys...
I'm cracking up.
And at Ben's expense!
shameful.
Ben, be good and come home.
xoxo
Aunt J.

Schenewarks said...

I'm sad Dad wasn't around much longer, but love the new look! Come home fast! Aunt Amy Jo