Today we saw the pediatric urologist nurse practitioner. She was supremely nice. Also, I've never seen a more decorated office EVER. The exam room Lillian was in was deemed the "princess suite" and appropriately so I might add. The whole room was pink complete with a decorative mirror at kid level surrounded with a pink and white feather boa. Each room had a theme. The waiting room was even covered in kid decor. Anyway...they don't want to DO anything with her at this point. She spent quite a lot of time getting history. She did say she would like her to have a DMSA test. I asked what that was and she said, oh and IV with dye and then some pictures. She said it would take a couple hours. It would determine whether or not she has any scar tissue in her kidneys. We get in the car and I google the test...#1 it's a nuclear med test #2 it takes three to four hours just for the kidneys to absorb the dye #3 then she has to have the xrays. Can I just tell you how quickly I flash backed to the nightmare vcug??? So, at this point I have more reservations about her having that test than I feel about her really needing it. It's not going to change her treatment and right now she's not symptomatic. She also said I need to have her urine tested any time she has a fever over 101. Wow, that might be an awful lot of urinalysis tests. They want to see her again in three months. OH- and as she was reading some of the ct's and xrays, she informed me that there is a cyst on her spleen. First time I heard that. She said it's no different than having a cyst anywhere else on your body...but still...why don't we get told these things when they pop up. That was on a CT from well over a year ago. She is also supposed to be on a probiotic and we are also definitely to keep her on her miralax so she doesn't get constipated...which is something we constantly battle. So many things that kind of feed into another affect Lillian because she has so many systems that are affected. We can't add more to her liquids because she has volume issues....oh I could go on and on how one thing flows into another...bah. It' s bit overwhelming as I process it all. So there you have it. I feel like this post is scattered and it probably is as my other daughter is sitting beside me asking me one question after another interrupting ever single thought I'm trying to convey.
Thank goodness for a cadbury egg on my way home and my wonderful husband for taking half a day to go with me. Such an easier trip with another adult not to mention the adult conversation for the drive.