Saturday, July 19, 2014

Diapers

This week Ulysses had the splints taken out of his vesicostomy. 2 - 3 times a day we have to insert an 18 French catheter to keep his stoma from scarring over. I am really liking the vesicostomy. When he first came home with it we had a super hard time preventing leakage. We had to change his diaper every hour and it was still sometimes leaking through 2 diapers. We started putting an "ultimate absorbancy" poise pad horizontally across his stoma site and the leaking improved a ton. He has started leaking again from the top of the diaper. I think maybe he has just gotten a little bigger and the diaper is not reaching as high on his waist. Sometimes his shirt gets tucked into the pad and just wicks all of the fluid right up his shirt. UGG. So what is the answer? I researched cloth diapers tonight. Maybe that is the answer, but I didn't see any that came up high enough or that looked elastic - y enough in the front waistband. I was thinking maybe i will try to make a belt of some sort or get a bellyband type thing that goes his waist. Maybe we can just pull out the coban and wrap that around the waistband. I think we can solve this problem pretty easily...the answer just has to present itself! haha. Anyone have any other ideas? Overall, it is totally awesome to not have the suprapubic catheter and foley bag to worry about all the time. He is very mobile and i am less worred about him clomping all over the world! He also had his initial PT with all of the measuring for his AFO's. Apparently, they had to workshop him to decide what he needs, so we will get his perscription sometime next week and then work on getting them locally. I am really excited about that. He moves around pretty good but I know he will do so much better with the AFO's. The next big thing for us to tackle is the bowel management. We have him on miralax and senna and in a box, unopened, is a cone enema. At some point, we will open it up and watch the youtube video about a hundred times and then do it. We are kind of avoiding it and talking about the week long bowel managment program at Cincinnati Children's Hospital...but we can probably just do this at home. I have 2 weeks of nights and 2 weeks off in September for us to work on it. I know once we have it figured out it will be easy peasy...we just have to start! In completely un-related news...Han was overheard saying this to the other boys last night "Y'all need to be quiet". oh my! nothing as cute as my 14yo barely english speaker saying y'all! Love it!

4 comments:

Jamie said...

Hi!! I have 3 kiddos, 2 with spina bifida. One of my gals also has a vesicostomy. I have tried to find cloth for her, but was unsuccessfully, unfortunately. Anyhow, the best thing we found is to take a size 1 diaper. Turn it inside out. Fold in the sides, then tri-fold it (so the absorbency is sticking out) . Put this over the vesicostomy, then put on the pull up or diaper as normal. We do still have some pull-up rolling episodes, but it helps. It can also be done with a pad. E-mail me if you would like pictures and I'll show you how I do it :). jamie_lugo@hotmail.com. I've heard that onsies work well too, but Madi is 5, and there are no onsies in her size. Dance leotards do keep the pull up from rolling though.

Michelle said...

Thanks Jamie...I am going to try it next! We have been moderately successful using a poise pad, a diaper over it wrapping it around his waist and then tucking it into another diaper put on the right way. We still are having leaks. I love the idea of the size one diaper inside out...hmmm.

twinrun said...

We've successfully used both size small of Attends Extra Absorbent Breathable Briefs ( http://amzn.to/1zgl3m1 ) and Tranquility Slimline Briefs ( http://amzn.to/1vtJj0n ).

Snap-EZ ( http://bit.ly/1rkEtwj ) makes some great pocket diapers with sizes from baby to adult.

For cloth you might try Baby Big Size Cloth Diapers ( http://bit.ly/1pp0ni9 ) which are very popular for older kids with special needs. A great deal at only $7 each. We use these at night for our son who is 7yo. These are the same size as the FuzziBunz XXL which are no longer available. I would suggest ordering just one first to make sure the rise is high enough.

twinrun said...

We've successfully used both size small of Attends Extra Absorbent Breathable Briefs ( http://amzn.to/1zgl3m1 ) and Tranquility Slimline Briefs ( http://amzn.to/1vtJj0n ).

Snap-EZ ( http://bit.ly/1rkEtwj ) makes some great pocket diapers with sizes from baby to adult.

For cloth you might try Baby Big Size Cloth Diapers ( http://bit.ly/1pp0ni9 ) which are very popular for older kids with special needs. A great deal at only $7 each. We use these at night for our son who is 7yo. These are the same size as the FuzziBunz XXL which are no longer available. I would suggest ordering just one first to make sure the rise is high enough.

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