Thursday, January 9, 2014
When You Hit A Wall, Go Around.
Funny update today.
When we first saw the pediatric Othulmologist he referred us to UC Davis for treatment. Our back up choice was The Children's Hospital. He put the referral in and we waited a couple days to let it go through. An amazing office worker at our Othulmologist, Norma, and I began calling several times a day to make sure they received the referral and were working on scheduling an appointment. Finally after four days of this back and forth with UC Davis and being on hold for an hour an office worker told me in a rude, non understanding way, that the referral was on the doctors desk and even though it was marked "urgent" we will be contacted soon for an appointment but he was taking ten days off for the holidays.
Those who know me understand that all that was to me was a challenge to get my baby the care she needed, when she needed it even if it meant going some where else. So Norma and I sent the referral to Children's, they called me the next day on a Friday and we were in for an MRI that Tuesday.
Well guess who called today? Yes, UC Davis. She wanted to finally make that appointment for Emma. I told her in a nice voice, "this was an urgent matter involving a two year old child. I was not willing to wait for you so I transferred her to Children's. She has a brain tumor and we are glad we caught it. We will be staying there." Honestly, I was half expecting an apology for the delay since it has been an entire month since the referral was sent in but instead she said in a rather rude voice, "fine, what ever suits you." And then she hung up on me.
Why do I share this today? For two reasons, first, medical facilities are rarely in a hurry although often they should be. If I had waited Emma would have gone more then a month undiagnosed and untreated. It is important to be sweet and kind to everyone but unrelenting and when you run up against a wall then go around it! Second, I thought people should know that UC Davis may not be the best place to pursue medical care, enough said.
In other news, the essential oils I mentioned have visibly reduced the damage on Emma's eye. Her neurologist is pleased, gives us her blessing to continue the oils and she is hopeful that they are making a positive impact. I guess we will know for sure if the tumor has reduced in size at our next MRI.
I also registered Emma with The Children's Tumor Foundation which is working for a cure for Neorofibromatosis. I highly encourage anyone who reads this who suffers from NF to register, the more information they have and subjects to monitor will aid toward a cure for us all. http://www.ctf.org