On the day of Angie's hemispherectomy surgery in May, 2011, Dr. Wray came to us to let us know that the surgery was over and that it appeared to be without complications. He assisted in the surgery and he described it to us in detail. We had not met him before this time. As we waited anxiously to see our girl, Dr. Wray sat with us for almost 2 hours. During that time, he asked us about Angie-who she was and what she liked, etc. He asked about our family and he reassured us about the positive outcomes of hemispherectomy procedures. His presence was such a gift to us. On that day, he told us he was transferring from Seattle Children's to Doernbecher in Portland and his position was in the Epilepsy Unit that follows Angie there.
We have kept in touch with Dr. Wray and he has followed Angie closely. So, we made our third visit to his classroom this week to talk about Sturge-Weber syndrome and the process of deciding on and completing the surgery. And, of course, about her miraculous recovery.
Talking about that time in our lives is both therapeutic and traumatic for me. I love to tell about the strength and courage that Angie exudes as she strives towards reaching her potential. But first came the days when some doctors and state employees wanted to give up on her and initiate a Do Not Resuscitate order instead. I think that Dr. Wray asks us to talk about that time so these future doctors will see the hope and will not similarly give up on patients when the prognosis is grim. The students had great questions and after the class Angie told her knock-knock jokes to a few, which they loved.
After the class, Angie had her first ride on the tram. We went up to the hospital for her appointment with Dr. Wray to talk about the recent return of her seizures. She loved the tram!
Dr. Wray stated that he is not surprised that the seizures have returned because she has evidence of the disease on the right (intact) side of her brain also. He statement was reassuring but also unnerved me because it suggests progression of the disease and under no terms will he operate on the right side of the brain. There are some medication options, though, and for now we have increased the medication she is taking. Back to one day at a time and we know how to do that.
Dr. Wray also suggested some other referrals for Angie that will help us understand and manage her sleep issues and behavior. According to him, "If the brain doesn't work, EVERYTHING is affected, whether the child currently has seizures or not." We are grateful for the referrals and foresee a very busy few months ahead.
Angie is also being evaluated for surgery on her shoulder, which is painful and has lost mobility because of lack of use. She will have an MRI and a consult with a joint specialist soon.
Our girl is keeping us on our toes, as usual. I am feeling a little overwhelmed but at the same time I am looking forward to getting some answers about how we can better support her progress. She is such a joy, every single day, and I am grateful for the perspective she gives me about what is and is not really important.
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