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She Doesn’t Get It.

You don’t have to ask Rae about her backpack, or the tubing sticking out underneath her shirt, or even about her gtube for her to show you her stomach pridefully. I’d say she flashes her belly, with her little plastic mic-key button 20 times a day to anyone and everyone. But lately, as the pang […]

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Isolation

So in case you’re just tuning in, we are in the hospital with Rae. She has a staph infection (third one since June) and E. coli and wasn’t responding to antibiotics at home, so her Kennedy Kreiger doctor said to be more aggressive and do IV antibiotics to wipe out the infections quicker. So here […]

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Tube Questions

I know Rae’s gtube is a curious thing.I’ve been googling NG tubes and gtubes since we knew that it was a probability that she needed one back in December.They’re different. It’s not the norm, and it’s kind of AMAZING. Since we made the decision about the gtube, I’ve answered probably hundreds of questions/comments from different […]

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HOME.

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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