[/caption]Yesterday was a wild ride of a day. We had a care meeting with all of our doctors to discuss future plans. First our neurologist, Dr. Hsu, explained how the hypothalamus controls both the body's parasympathetic and sympathetic nervous systems. How it used to be that Ellie would be awake all the time (parasympathetic) but now Ellie is asleep (sympathetic) all the time. Both responses are controlled by the hypothalamus. Then our oncologist began to discuss the treatment we have pursued thus far and why we have not pursued radiation therapy. She wondered if we wanted to discuss that possibility with the radiologist. As she was talking, I got the distinct feeling that she felt as if she had somehow failed Ellie. I started to tell everyone how I did not feel like what has happened over the past 6 years has in any way been a failure, that I feel like everyone in the room has increased not only her life span, but her quality of life with the amazing care and love that has been provided. Everyone got a bit weepy at that point.
Suddenly, our neurosurgeon swept in and took a seat changing the whole atmosphere in the room. He requested to know what had happened thus far. Then he stated emphatically that with he felt as if Thom and I were the ones who have extended her life, that the hospital can do all they want but without family support and diligence none of that matters. He seemed frustrated that her shunt had not been checked and ordered a quick brain MRI to check it. He felt that his work with the shunt was not over. He likened it to treating increased sodium and then not checking to see if the treatment worked. It did not seem as if he felt we were near the end, as he mentioned the possibility of her living a year or two. The mood in the room completely changed after he entered, from sadness and resignation to hopefulness and action.
[caption id="attachment_3168" align="alignleft" width="300" caption="Elmo gets a little pushy."]
[/caption]After an MRI and CT scan it was discovered that her shunt was not functioning properly, basically the 2 sides of her brain were no longer communicating. Ellie was admitted and hooked up to the heart/oxegyn monitors where it was discovered that she was skipping breaths (apnea). It was decided that surgery could not wait. While in surgery one of the residents re-discovered Ellie's shunt that had been placed last December. With all of the surgeries over the past year, the shunt had moved and was now embedded in brain tissue plus scar tissue was blocking the middle of it.
Today Ellie is resting and sleeping and having some difficulty moving her left side. She did arouse when our super friend Karly just stopped by, which is what we call piming (perfect + timing).
What I am taking from the whole conversation yesterday is that every doctor is simply giving us his/her best guess based upon his/her area of specialty, history, and experiences.
A big shout out to my Zumba friend Jen for the wonderfully nourishing pumpkin soup, brownies and cake on Tuesday. As I have mentioned before, she sends me breathtakingly gorgeous e-mails. Here is a quote she sent me a while back, I love that it is from Oprah because I used to quote Oprah all the time. "Every challenge we take on has the power to shake us---to knock us to our knees. And yet what's even more disconcerting than the jolt itself is our fear that we won't withstand it. When we feel the ground beneath us shifting, we panic...What I know for sure is that the only way to endure the quake is to shift your stance."---Oprah
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