Saturday, July 19, 2014
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!