News from the evaluation is all good!! NO surgery. It turns out that Kendra will be what's informally known as a "positional" catheter user. Some kids do better when they are laying down to be cathed through the Mitrofanoff, others standing, and others sitting. Most kids can do any of those interchangeably, depending on where they are when they need to be done. But Kendra has to be sitting in a totally upright position or the cath just won't go in! They think part of it is psychological...it hurt the first couple of times the kids tried it, so now when they lay her down she clenches her tummy muscles, which partially closes the channel. When they try to force it in, it hurts, reinforces her "dread factor" and it becomes an endless cycle. Same result if she's sitting in a more slouched position. We just have to teach her to sit totally straight and upright when she's cathed and we should be golden!
So they put a new Foley indwelling back in because with all the messing with it and trying to figure out what was going on with it, it's irritated and has swollen again in reaction. All Jenny has to do is make sure the indwelling is all the way in, then remove the cap and cath her into either a catheter bag, directly into the toilet, or even one of those little bedside urinals that they use on guys who are hospitalized. She said even though her hands were shaking like crazy when they had her do it, she got 300+ccs of urine out - more than at any other time since before the surgery. Sometimes at home all she would get was a big fat zero and a crying little girl! Today Kendra looked down to see what they were doing and then went right back to her iPad. Not one tear after the Foley was reinserted. They put her on some anti-inflammatory meds and as soon as the irritation subsides from the exam and the poking and prodding Jenny can take the Foley out and start using the Mitrofanoff as it was intended - a totally invisible opening in her belly button where we slip in the catheter. That should be in about 2 weeks. Jenny felt really bad that it was so difficult for Kendra just because she was doing it wrong, but they reassured her that she had done nothing wrong - Kendra is just one of those kids who needs to be sitting in order to flush and cath her. Simple as that, and as far as I'm concerned, I'd ten times rather they took her down for a million false alarms than miss one problem that might be starting up.
The kids are staying one more night in Denver anyway, even though Kendra has been cleared to come home. Tomorrow was supposed to be surgery day, but they are going to take Kendra to the aquarium instead of the hospital and then come home Wednesday. Jenny is still just a little worried about using the Mitrofanoff herself since she's still convinced she messed it up, so she wants to get an entire day's successful cathing in before she's comfortable coming back. Again, fine with me! Better safe than sorry and those trips are stressful on everyone.
I sent a quick email to Camp Campbell to let Katie know that Kendra is fine and will be home before camp is even over. Got one back a little bit later from the camp director, who said Katie's response was, "Oh, good! Now I can really relax!" And no, @TexasLisa I ain't sharing that little girl - she's all mine!!
Thanks for all the wishes and prayers!