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Thread: Tyler's at it again

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  1. #11
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    Oct 2006
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    So. Calif.
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    Took Tyler to his swallow study yesterday. They gave him a thinned barium solution, which he promptly aspirated on. Tried a thicker consistency and had to stop the test. Too risky to continue. Sure explains the aspiration pneumonia he had last month. Have no idea what they are going to suggest to do. I know they mentioned a trach, which we are not thrilled with. Still waiting to schedule the EKG and check on his heart. Having a lot of seizures over the past two days. Something is brewing.
    Last edited by Tamie; 06-14-2017 at 05:30 PM.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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