We went to do the urodynamic testing today. The Dr. (the neuro urologist) was a nightmare. He had the absolute worst bedside manner. We see a lot of specialists, and this one was by far the absolute worst. Some of his ridiculous comments included...calling Kendall "mentally retarded," and telling me to work on my "frazzle level" and "lowering my standards for her care." I couldn't even do his horridness justice by telling you, but let's just say it was bad. Really, really bad.
They took her back to the procedure room where her home health nurse and I held her down and a sensor with needles was placed in her rectum. From there, these nurses who "do this all the time" (but apparently not frequently on young three and a half year old girls) proceeded to attempt over three times to cath her. We didn't even make it to the part where they injected the dye for the test because she pushed out the catheter when they were finished taking out her urine. In the room, the nurses informed me that they can do this under anesthesia. They warned me that there was also the possibility of putting her through all this and the test result still not being read properly because of all the movement. Kendall was screaming in agony, and I made the call to stop.
Our appointment with our urologist was cancelled by them and we were given instructions to schedule the procedure at the same facility under anesthesia. The Dr. ran her urine and told me she didn't have a UTI, and then followed me out to the check out lobby where he made me cry again talking about how I need to take care of myself first if I'm going to be expected to take care of my child.
I guess in his eyes I'm a basketcase.
But he also doesn't know that I've never cried in front of one of Kendall's Dr.'s before. Ok, maybe I have, but not in a long time. I don't lose my composure easily anymore. I had just spent an ungodly amount of time holding her hands while she screamed and writhed in pain. I wasn't prepared to get the speech about how "God has a plan for my daughter," or the part about how "she has a lifetime of issues that will require me to face tough situations." Especially from a pompous Dr. who specializes in old lady incontinence.
Problem is, he's the only one around. And supposedly the best.
But he doesn't have the ability to put a kid under anesthesia at our beloved Cook Children's Hospital. They don't even have his role at the hospital...so our hands are tied. She needs the test, and we have to do it.
I guess between you, me, and the fencepost, the most upsetting thing about this whole ordeal is this: Because Kendall is considered delayed, and has a label of CP, and lots of other things, they didn't treat her like a typical three and a half year old girl. They attempted to do this procedure on her while she was wide awake. Completely aware of what was going on. (She clenched on to her nurse's arm as she tried to put her down on the table, clearly petrified.) And it took me close to 20 minutes to stop them.
So now we wait to schedule it under anesthesia. More waiting, and more worry.
ps: I actually shortened this post A LOT. I really wanted to go into more detail, but I'm working on my frazzle level.
1 week ago