http://www.starchwars.com/2007/09/how-do-you-wake-up/ Glycogen Storage Disease Wed, 20 Jul 2011 15:08:47 +0000 hourly 1 http://wordpress.org/?v=3.2.1 http://www.starchwars.com/2007/09/how-do-you-wake-up/comment-page-1/#comment-326 ANNA M Thu, 20 Dec 2007 15:56:30 +0000 http://starchwars.com/control/lib/blog/2007/09/13/how-do-you-wake-up/#comment-326 HI JILLIAN! i HAVE GSD AND I LOVED YOUR STORYS!!!!!!!!!!!!!!!!! HI JILLIAN! i HAVE GSD AND I LOVED YOUR STORYS!!!!!!!!!!!!!!!!!

]]> http://www.starchwars.com/2007/09/how-do-you-wake-up/comment-page-1/#comment-193 Stacy Sorenson Fri, 21 Sep 2007 15:18:28 +0000 http://starchwars.com/control/lib/blog/2007/09/13/how-do-you-wake-up/#comment-193 I forgot to mention that I can so relate to missed nightly feedings. One night, I was so exhausted that I got up at 3:00 a.m. to feed my four-year-old, but went to bed without puting more feeding into my one-year-old's pump. I had always received comfort in knowing there was an emergency alarm on the pump until that next morning. The pump had run on empty without alarming me and I woke up at 5:47 a.m. (Yes. The time is still engrained in my brain, even three years later)in a panic. I ran to his room and found him almost gone. He was unresponsive and breathing rapidly. His skin was ashen gray and his bed was drenched with perspiration. As my heart began pumping a million times a minute I tried to think logically of what I should do. I grabbed a leftover syringe of dextrose and pumped it into his g-tube as fast as I could, all the while cursing myself for being so careless as to forget his feeding. Fortunately, it worked miraculously in a matter of minutes and his life was spared yet again. I really believe guardian angels were watching over him that night. I forgot to mention that I can so relate to missed nightly feedings. One night, I was so exhausted that I got up at 3:00 a.m. to feed my four-year-old, but went to bed without puting more feeding into my one-year-old’s pump. I had always received comfort in knowing there was an emergency alarm on the pump until that next morning. The pump had run on empty without alarming me and I woke up at 5:47 a.m. (Yes. The time is still engrained in my brain, even three years later)in a panic. I ran to his room and found him almost gone. He was unresponsive and breathing rapidly. His skin was ashen gray and his bed was drenched with perspiration. As my heart began pumping a million times a minute I tried to think logically of what I should do. I grabbed a leftover syringe of dextrose and pumped it into his g-tube as fast as I could, all the while cursing myself for being so careless as to forget his feeding. Fortunately, it worked miraculously in a matter of minutes and his life was spared yet again. I really believe guardian angels were watching over him that night.

]]> http://www.starchwars.com/2007/09/how-do-you-wake-up/comment-page-1/#comment-192 Stacy Sorenson Fri, 21 Sep 2007 15:08:45 +0000 http://starchwars.com/control/lib/blog/2007/09/13/how-do-you-wake-up/#comment-192 Jillian, I love reading about your GSD life. Humor is the only way to get through it. I admire you for that. What a great blessing for you to get one night a week to yourselves and I am so glad that you get that one night of sleep as well. I look forward to meeting you. Jillian,
I love reading about your GSD life. Humor is the only way to get through it. I admire you for that. What a great blessing for you to get one night a week to yourselves and I am so glad that you get that one night of sleep as well.
I look forward to meeting you.

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