We are home from Ramya's exploratory surgery at Phoenix Children's Hospital today. Dr. Zuniga, Ramya's urologist, wanted to go in and try to figure out why her mitrofanoff surgery that she had in India isn't working correctly and also agreed to take off her granulation tissue for her, as it itches her like crazy. They told me that I needed to stay in the room and they would bring her back, and I very nicely told them that wouldn't work for us. They agreed to let me go back with her until she was asleep (although they made me wear a funny suit... see below) and that was nice. Unfortunately they woke her up before they got me, and she was NOT happy about that. I walked up to her bed and she didn't look happy. I said, "Hi Ramya, are you feeling ok?" and leaned down to kiss her. She broke down sobbing and saying, "mommy" over and over. I just held her and rocked her until she settled down. The nurse said she was crying and they thought she was in pain, so they gave her medicine. I told them she was probably upset and looking for me because I had told her I'd be there when she woke up. I'm sure she was confused as to why I wasn't. They had also put an IV in her hand and she told me that it hurt. We came home with pain meds in case she needs them, but so far she hasn't.
There is some good news and some not amazing news from Ramya's surgery. The good news is that Ramya's bladder and muscle tone seems pretty good, considering. Her bladder isn't too rigid, is a decent size, and can hold an ok amount of urine. Her muscles aren't too weak and should be strong enough to keep her urine in. She leaks quite a bit, though, even on ditropan, so we aren't exactly sure why she's not holding in urine without leaking so much. The second mystery is that Dr. Zuniga found a cavity in the stoma area that is keeping it from draining normally. Basically, instead of the tube going straight down to the bladder, there is some kind of cavity part of the way down. Sometimes, "when the stars align" the catheter goes straight down through the cavity in to the bladder, and we can get urine out. Mostly, though, it just gets stuck in the cavity and coils. There is some old urine in there, as well as lots of mucous. Dr. Zuniga wants to do a dye study where we put some dye in through the port in the belly button and just see where it goes and what it does. After that, we can decide how to proceed with fixing it. It may very well mean another surgery, but we shall see. He was able to take off the granulation tissue for her and I'm excited for it not to itch her any more. When she saw it was gone she got VERY excited and had to show Conner, David, and Madi. She keeps saying, "look momma!! It's better!" and showing me too. I'm glad she's at least happy about having that gone.
After we got home she ate some toast and eggs. We're relaxing and watching a movie, but she seems back to her normal self! I'm thankful that she is feeling better so quickly. Kids sure are resilient!! Thank you for all of your prayers!