Lizzie’s Journey

Please visit our new site at www.kidneyreflux.info for updated articles and information.

After we realized that Lizzie’s reimplantation had failed, we knew that we needed to explore other options. We knew from a urodynamics study that her bladder was not functioning as it should, but we didn’t know why. Our main goal has always been to keep her kidneys safe, so we needed to figure out how best to do that.

After lots of tests, and consults with different doctors, we decided that our best chance to keep her kidneys healthy was a vesicostomy. I have to say that we were a little blindsided by it all. I had done all of the research, and asked the right questions, but never in my wildest dreams did I think my daughter would need such an aggressive measure to keep her healthy. It had only been 9 months since her original diagnosis.

Lizzie had a cutaneous vesicostomy put in when she was 11 months old (she also had a Deflux injection at this time). A vesicostomy is a urinary diversion where the bladder is redirected through the abdomen. A small incision was made through the abdomen, about an inch below her belly button. Her bladder was then attached to the incision so that her bladder could drain continuously through the belly instead of the urethra.

With this type of vesicostomy, urine is not able to collect in the bladder because it drains continuously. For Lizzie, there is no bag, it just drains directly into her diaper. Because there is no urine collecting in the bladder, it cannot reflux into the kidneys causing infection.

For us, the vesicostomy has been amazing. We have had to learn some creative diapering (too say the least), but it has been so worth it. Lizzie went from having monthly kidney infections with multiple hospital stays, to having NO infections. She has been infection free for 6 months!!!

The vesicostomy is only a temporary solution, so eventually we will have it taken down. Originally, we were only going to keep it in for 12 months. That 12 months is starting to look like it will be more like 3 years, but if it keeps our little girl healthy, the decision is a no brainer.

There are a lot of struggles that go along with the vesicostomy, and I’m not sure we will ever get it “right”. Our biggest struggle is keeping her dry. Every time we find a solution, the game changes (lol). Right now we were using size 3T-4T pull-ups with size 1 diaper turned inside out and tucked into the front. This allows us to change the smaller diaper every hour or so, and the pull-up every other change. At night, we top it all off with a Goodnites, making her look a lot like a marshmallow!

Now that she is getting bigger, she is urinating both from the vesicostomy and her urethra, so we are having to change both diapers at almost every change. She is also getting taller, so we are always looking for creative solutions. Because of her yeast issues (due in part to the constant antibiotics) cloth diapers haven’t been a very good option, so we are learning as we go. We learned very quickly to keep her in onesies. If she can’t pull the diaper down (a trick she learned from brother!), she can’t use my couch like a fire hydrant!!!