So many change's in the household I tell you..
Little man returned to school two weeks ago and is doing very well. He is catheterizing his neobladder with minimal asssistance but I think the concept of "adequate hydration and drainage" is still lost upon him.
His incision sites are looking much better but the scar from the superpubic tube is rather nasty and puckered inward. :( All things considered it is a minor thing, but it bothers him so very much; not so much cosmetically, but I am pretty sure he has an adhesion at the site in question. He has been complaining of periodic pain in the region. We are following up with urology today.
Loki is now off all medications related to the surgery. He is still on his ADHD medication even though it does not provide the same controlled as the stimulate based medications.
Loki's sister is having a journey of her own and I think I will be creating a blog for both of them. She has PDD-NOS among other things.
Wow. I didn't realize how long it's been since I posted. Loki is just finishing 3rd grade. His cancer is still in remission. We moved to a new state. There have been so many changes that have occured during this time. Too many to list right now. Let us just say that Loki is doing very well.
He continues to struggle in some subjects at school. He has had issues with his illieal conduit and left kidney. With the repeated kidney infections since Jan 2011, we sought answers for several doctors. Ultimately it was decided that Loki absolutely needed surgery to revise the conduit created when he was 18 months old. The conduit was no longer doing what it needed to do, and had not done its job correctly for quite some time.
Loki now has a mitranoff valve through his belly button into a neobladder. It was a rather extensive surgery with several complications. He spent a total of 18 days in the hosptial during this latest procedure. He has a range of emotions from happy to disgust to anger. It hurts when he is frustrated and tells me that he hates me. And demands to know why we did this. But we know it was necessary andI know he is confused, frustrated, and coming to terms with some serious changes to his body and self image.
The mitranoff should not leak. Loki no longer has an external pouch!!!! He does need to catheterize every four hours or so. Moving forward, I am hoping that this arrangement will increase his self esteem. He does have scars, external, internal, spiritual.... but hey, chicks dig scars. :) And that's what I tell him.
