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Last Tuesday we had Rae’s gtube placed.It should have been 2 nights then home Thursday morning.But if you know anything about Rae, she refuses to do anything standard.So after 10 days,7 blood draws,5 antibiotics,4 bags of IV fluids,4 IV changes,3 hours of sleep,an ultra sound,a barium contrast X-ray,a staph infection (possibly MRSA? They never confirmed),a […]

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Surgery.

Yesterday sucked. I woke up at 3:30, despite taking a unisom the night before. I did laundry, cleaned the counters, vacuumed, and cleaned the bathroom, followed by chugging 7 cups of coffee (it’s disgusting that this isn’t an exaggeration) and listening to Carry On on repeat until it was time to drop Little S off […]

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More Options.

The NG is back. We got a full 7 days without it, but then Rae’s GI called. I had sent her (GI’s) nurse an email with her weight, the video of her walking and expressed my concern about how much she’s sleeping. We talked about the regression and her exhaustion and she was really not […]

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First NG Feed.

Every 17 seconds I can hear the whirling of the pump. For 14 hours of the day, Rae’s movement is closely followed by an IV stand and a small tube she can’t stand being behind her ear. Things went well yesterday. The GI procedures went well and things looked good, we’re just waiting in the […]

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