January 3, 2014


three days into the new year.

three different hospitals. 

I knew having a baby would be hard sometimes. I knew that having a heart baby would make it even harder more often. But this is crazy, people. 

We went to the ER in San Diego on Tuesday night (the 31st), around 11:30pm, because Ruthe had been spitting up all day and not tolerating any food at all. She was discharged around 6am, with a recommendation to take her home to see her own doctors as soon as possible.  We drove home that day, called her doctors first thing yesterday morning (the 2nd), and settled down for a long weekend of snuggling. Then, at 9:15pm, she yanked her g-tube out using her monkey toes.  So we rushed her to the ER next door to our house, just like all the doctors and nurses have told us to do the first time it happened. (In retrospect, I think I should have just put it back in myself and called the doctors from home afterwards.)  The first hospital of the night didn't get us anywhere. They puttered around for an hour, and then finally told us they didn't really know what to do and were waiting for a doctor.  (Again, retrospectively, we should have packed her up and taken her immediately to our normal hospital.) Once we finally escaped from there, we stopped by the house to grab her bag, put on some real clothes, and headed directly to the hospital that we know and love.  We got here around 1am today (the 3rd), and what started out to be a wonderful experience got real serious real fast.  I'm not blaming anyone, but it is a problem when nurses don't listen to parents of chronically sick kids.  I know my baby and I know what her tube is supposed to look like.  The nurse put it in WAY too far, and when they pushed the contrast-fluid through for the X-ray it all came right up into her mouth and nose and then leaked into her esophagus.  So we're admitting her to the pediatric unit for observation.  Mostly, I want to get her out if the ER and into a bed with a nurse that's familiar with complex cases.  And that maybe has a few extra minutes to listen to the mom who's been to the rodeo before.  It's 4:15am - go kiss your baby.

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