Today was Lizzie's Urodynamics Test....
Today Lizzie had her urodynamics test, and she amazed me as always. She is so patient and so tough. I am trying so hard to follow her example! The test we had today shows how the bladder is functioning and if there are any problems with the pressure in the bladder or voiding of the bladder. They decided that we should do this test to see if Lizzie's reflux is being caused by the bladder instead of the ureters. We dreaded putting her through another test, but were hopeful that we could finally get some answers.
During this test they slowly inject a solution into her bladder. She was such a trouper. She laid still on a table for an hour with two catheters and a full bladder. I'm not sure I could have done that! She hardly even fussed. Don't get me wrong, she made sure we knew she didn't appreciate it, but once she made her point she was very patient and continued to be her sweet happy self. I was able to hold both of her little hands through the whole thing.
Going into the test we knew that her bladder was enlarged, but we really weren't sure what that meant. During her test we realized that her bladder is so enlarged that they were able to inject three times the amount of fluid that it should hold before they decided to quit. Unfortunately the test can't tell us why. Her pressure, however, looked constant and even, which was a good sign. The anticipation going into this test was that the bladder would not void entirely and that would be the problem. If the bladder doesn't void completely, then the urine, along with it's very good friend bacteria, hang out and simply move between the bladder and kidneys without ever fully leaving the system. This causes the infamous kidney infections.
During the test we discussed our options with her urologist, and decided that the safest, most effective way to keep her healthy and protect her kidneys is a vesicostomy. A vesicostomy is a procedure where they make a small hole just under the belly button so that the urine can drain directly from the bladder through the incision. The reason for doing this is to keep the bladder empty at all times so that the bacteria can't grow and move into the kidneys. Our main goal is just to keep her kidneys protected, and this seems to be the best option for doing that. We also decided to go ahead and do the injection of a bulking agent into her ureters (Deflux) while she is under anesthesia. The bulking agent will help to make the space in the ureters smaller and hopefully help to reduce the reflux.
At the end of the test they check the voiding of the bladder which we expected to be very poor. It actually turned out to be pretty good. This meant that the doctor would leave the decision of the surgery up to us with his very high recommendation. Due to the fact that there was still a small amount of liquid left in the bladder and based on the ineffectiveness of the antibiotics, we have decided that the vesicostomy is still the safest road to take. Her doctor thinks that this should stop the infections completely for as long as the vesicostomy is in place. It is just a temporary step in a long process, and we will keep it in for 12-18 months. The hope is that we can get her healthy and keep her healthy and hopefully her body will heal. This procedure will in no way cure her but it should keep her kidneys healthy and keep her little body free from infection. I can't even imagine what that will be like! If it doesn't keep out the infection, we will know that her problem is with the immunity system, but we are hopeful that we never have to worry about that.
Her surgery is set for March 26th, just 3 weeks away. I am already so nervous. I hope we are making the right decision, and hope that we are able to have our little Lizzie healthy for the first time. I am really excited at the prospect of Lizzie being healthy for 18 months, but I am also concerned. It's just a temporary fix, and when it is time to take it out we will still be faced with the unknown. We still don't know what the problem is or how to fix it, but for my own sanity (what's left of it anyway) I just have to get through this and worry about the rest when the time comes. Just take it one day at a time and be grateful (and hopeful!) that we have a chance for 18 months of health.
Labels: bladder test, Diapering vesicostomy, enlarged bladder, Urodynamics, Urodynamics test, vur testing
