Support Registry Update

9/24:

Bringing Hope and Healing to Gabe photo
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Bringing Hope and Healing to Gabe
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Gabe continues to remain on the PICU floor to monitor his CSF and blood output from his external drain. Optic nerves are swollen and inflamed - to be expected due to hydrocephalus and cerebral edema - causing eye pain and pressure. He was able to get up to walk a bit yesterday and did well, though it was quickly tiring. A lot of resting, monitoring his drain output, and neuro checks (every 2 hours). The hope is to slowly wean him off the external drain to see how his internal drainage that was created during surgery performs, as the mass is completely obstructing the original drainage pathway. We still do not fully know what we are dealing with as far as the pineal mass is concerned. Overall just hoping for the best possible outcome and taking it day by day.

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