This blog is about Jackson Culley. It is about his life with Leigh's, a mitochondrial disease. It is about how we, as a family, work through the everyday life stuff and cope with his terminal illness. Why call the blog The Freckled Toe? I call it that in honor of Jackson. He has a dark brown freckle smack dab on his right big toe!
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Thursday, December 9, 2010
It's just a dream....
The day has started out really good. Jackson has been awake and alert. He looked good so i thought sitting up in his chair would be a good idea. I posted a pic on Facebook. He watched Sesame Street for an hour and got really tired. He went back in the bed at 10Am and is still there sleeping. The plan for the day is to continue weaning off the high flow O2 and continue to monitor his temp and breathing. His last temp was 98.6 it has been normal since 4am. He is almost back to his baseline of .5liters of O2. We are close I can feel it. It just a dream right now but I am hoping if Jackson continues on this path that maybe we can go home tomorrow. It's a big dream...
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