As you all know, we flew to Boston last week to get a 2nd opinion on Caity's condition. Boston Children's is ranked #1 in the country for Uro and Kidney issues.
Heads up, there is some TMI going on her regarding UROLOGY issues. If pee-talk makes you squeamish, you might not want to read the entire thing.
Let's start with the facts. Caitlyn has the following:
A genetic anomaly known as
Grade 5 (the worst)
AND a non-nuerologically caused
None of this is really new news to us. But it lines out the facts of her conditions.
while in Boston we had further Urodynamics testing which did reveal some amazing news to us!
1. There is no sphincter dysfunction. This means great things!
2. Her bladder, though abnormally shaped, stretched to capacity, lack of elasticity, is functioning NORMALLY!
3. She does have weak bladder contractions when urinating. This means that her bladder is doing what it needs to be doing, but it is weak. (This will be come important later in the report)
Some very awesome, and interesting news was that upon our first meeting with Dr. Retik, he told us that he has seen MANY children with Caity's issues. EXACTLY the same types of problems. We knew before that VUR is not rare, and neurogenic bladders generally are not either(except in Caity's case), BUT The whole combo of these issues and how drastically they have affected Caity we were told by Arkansas Children's was rare and something they'd never seen before. Dr. Retik told us that he has seen it often and coincidentally it was all in girls. He has also HELPED many of those children. *PRAISE*
After discussing things with Dr. Retik for about 30-45 minutes, we were led downstairs to a different section of the hospital to do the Urodynamics testing. To say that they do things differently in boston, would be an understatement. Urodynamics included what we are used to, a technician and a nurse But ALSO a neuro specialist and a uro specialist. This was great because while the test was being performed they were evaluating BOTH neurological and Urological responses. They asked us questions and told us thigns as the test progressed. Afterwards we met in an exam room, where they did a physical exam AND showed us the printed results of the urodynamics. AWESOME! As I stated above we got good news from the test.
After that, we got to leave the hospital for the rest of the afternoon. (Here's where I'll sneak in the mention that Hubby got us lost in Boston. he got us on the wrong bus!)
Then on Tuesday morning we met with Dr. Retik again. He was full of cheer, hope, and good news.
#1 -- He agreed taht the urodynamics went excellent with great news. He had been worried that there was a) sphincter dysfunction, and b) that her bladder was not functioning properly.
#2 -- He said her 13% of kidney function was salvageable and WORTH saving! And we discussed surgery to reimplant her ureter!!!! (Surgery is scheduled for July, more on that in a bit)
#3 -- The most fantastic to hear. He thinks that after the surgery to repair the reflux, given time to heal and retrain herself, that her bladder will be able to empty itself AND we will be able to quit catheterization.
SO, we left feeling very very relieved. We will go back for her surgery in late July, and be in boston for two weeks. After that, we'll just kinda let her heal and work on retraining her bladder.
6 months ago