Sunday, January 24, 2010

August 2009- what a letdown

As some may know, my brother suffers from severe epilepsy that is debilitating and crippling his life ruthlessly. We spent a week or so at Swedish Medical Hospital in the Neuro unit to try a procedure that would save his life, or pound a nail in the coffin. I was excused from school to care for my Dad and brother and resided at Swedish around the clock. In the end, the procedure didn’t work and I find myself hover over the coffin prying the nails out with all my might. During this time a lot of friends and family were curious about what was happening, I made a very general post and stumbled upon it this evening. Not a day goes by where I don’t wish for God made me an epileptic, perhaps I could fathom what my brother endures alone.
Post from August 2009:
Ok- here it is. AJ is at Swedish post removing a grid and electrodes from his brain. They were positive they would be finding a focal point that was starting the seizures. To the contrary, what they found was not a focal point but full ignition across the brain. If possible, they would have performed a resection and remove the focal point, but they can't. It wasn't what anyone expected; AJ is not what they expected. They have never seen anything like AJ's case. He doesn't respond to meds well, he has memory on both sides of the brain, they have discovered a capillary dilation in the left frontal lobe, and they have never seen any patient seize as much as AJ in 24hrs. (Well over a 100 Tuesday, occurring every 2-3 minutes- almost grounds for inducing a coma, thank God AJ stopped.) So, our hail mary failed us and we move on to plan B. There is a new med he is coming home on (Lacosamide) that has been on the market for only a month, and Dr. Gwinn informed us that there is a double implant that is placed in the brain stem that has been 100% successful, but has yet to be approved and will hopefully be in the next year or so. (Attention all nurses: we all know how dangerous dabbling with the brainstem is.) This was hands down the WORST experience my family has endured. AJ's head is swollen and deformed, my Dad's hope is crushed on this cold tile floor, and I run around in attempt to open any window since this door has slammed in our faces. Some good does shine through- this case of AJ's will be used for massive research and education. His case may help another epileptic find health and a cure. Nevertheless, can you imagine helping others when you need the help as well? The moment I told AJ will be one I never forget. “ It didn't work AJ- but will find another way.” I am angry, I am let down, and I wish everyday it was me- that's how it went and I would rather not talk about anymore. Give me a month, let the edges of the wound approximate, and maybe I will share the scar.

Thank you all for your love and support- but the worse is to come.
Wow- I read this and am taken back to that day when AJ opened his eyes as I gripped his hand in utter fear and despair. “It didn’t work.” I have pushed this moment away, I have focused on trivial things, and I grimace at the thought of that failure. So, tonight I will pray and marinate in the truth with hope that I can accept this and move forward. I pray that God opens a window, or cuts a doggie door for us.

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