Fiona Midori King

Fiona Midori King

Hope 4 Fiona

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Fiona is now at home.  She still has a sore throat from the breathing tube that was put in while she was sedated. It’s quite a relief to be home; we are all much more comfortable at home. I stayed with her the entire time at the hospital except for a couple hours when Paxton and I went to dinner at Ruth's Chris.  Paxton and I needed a satisfying dinner after Fiona had 7 hours of surgery and we found out that her CFS pressure was 50 cm(which is very high) and that she may need a shunt put in (brain surgery). A normal CFS pressure is 12-15 with figures less than 20 acceptable. The neurosurgeon was ready to operate on her Thursday but we decided to wait because it was not an emergency and we wanted to consider all of our options.  Wewant to give Fiona the most comfortable life that is possible - shunt or no shunt, and its tough to put her through brain surgery if she’s only got a few months left with us.  I think sometimes people look to doctors like they are gods because of how far along medical science has come and its ability to heal people.  Some people implicitly trust whatever the doctor says or don't feel like they can question a physician. Truth is our voice is all we have in this type of situation. Paxton and I are the only advocates for Fiona. This journey has forced Paxton and I  how to use our voice in a powerful way to protect our child. We asked so many questions about putting a shunt in and the pros and cons of it.  I think the doctors were quite surprised with how much we knew and the questions we asked.  Lesson learned:  Just because you didn't go to medical school or nursing school, it doesn't mean you can't ask questions, it doesn't mean you can't question some of the care you receive, and most importantly, it is actually your right as a patient to receive and demand the best of care. Our goal is to provide our little girl with a comfortable life and to do what's best to care for her. 



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