Ice Cream Reward

I took Carly to see the urologist today, which by the way, Dr. Donovan is the BEST pediatric urologist ever!!! He quickly came to the conclusion that Carly has been traumatized by recent experiences and to NEVER, EVER, EVER, EVER go back to Del Webb. The fast that it took 8 attempts to catheterize her infuriates him. You would have thought she was being beaten just having him take a quick peak at her. 

His first concern is that her reflux has gotten worse. She went from grade 2 to grade 3 in a year and having breakthrough infections while on antibiotics. His second concern has to do with her bladder muscles. Carly has difficulty voiding completely and has frequent small voids- he says she has voiding dysfunction. It's not normal and we need to know if it is a muscle issue or pain or fear. 

Because of her Hydrocephalus and Chiari malformation she could have suffered damage to her urinary nerves when her brain was swelling so she needs to be tested for neurogenic bladder- (basically means her bladder muscles aren't working right because of nerve damage). This is normally done through a test in the office called urodynamic testing. Remember how I mentioned Carly won't let anyone touch her? That makes doing this test in the operating room mandatory. The good thing about already being in the OR is that if she tests negative for neurogenic bladder then he will go right in and do the Deflux procedure. Deflux is an implant injection of a gel placed where the bladder and ureter meet to make a bulge so the urine can't flow back up the ureter. It's 68% effective and if it doesn't work and the reflux does not get better then she can still have surgery. The deflux injection is our best option and what we are hoping for. Neurogenic bladder would mean medication with the possibility of it being for the rest of her life. Neurogenic causes incontinence. What 17 year old girl wants to suffer from incontinence!?!

As much as I don't want my little girl to go through another surgical procedure I also don't want her to be on this antibiotic for another year or two or three years while we watch and wait to see if any of this goes away on its own because most likely, it won't! Instead, she will just be a 4 or 5 or 6 year old that is still struggling to be potty trained, will have had many more UTI's and will be loosing kidney function. 

So now we are waiting for her procedures to be scheduled.

After going through another exam and kidney ultrasound I promised Carly ice cream. I think she liked it. AND it made up for me holding her down to have the ultrasound. (picture this...me laying on the table, Carly laying on top of me, one leg wrapped around her legs and both hands pinning her arms down) Both humorous and sad.

She deserved an ice cream!