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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Wednesday, June 15, 2011
Answers...
So, the million dollar question, Why is Jackson dropping his sats ( O2) at night. After all the tests, doctors think Jackson's seizures where causing him to stop breathing, dropping his sats while sleeping. He never had any of these events in the hospital. His EEG revealed Jackson having an increase in his seizures so that theory makes sense. Pulmonary's theory of reflux was never fully proven. Jackson did reflux during his test but it wasn't anymore than you or I would during the day. The elusive sleep study wasn't reallyany help in determining what would cause him to drop his sats in the night. It did show Jackson does not sleep like the rest of us. His seizures don't let his brain rest. They said they saw constant seizure activity during the sleep study. Dr. Kleinman the resident that has been taking care of Jackson the last 3 visits in the hospital said Jackson had grossly abnormal sleep pattern. So rest is very important for Jack. I am going to send all these test results to our docs in TX for a second opinion. Neuro in Memphis recommended increasing the Zonnegran levels to see if we can control the seizures better. I plan on researching the results myself. Please continue to pray for Jackson and other mito kids. We need a cure.
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