Thursday, June 26, 2008

A difficult night

The night has been difficult.  We've been given strict minimums of how much Clare must be consuming and at what intervals.  She is supposed to wake up herself and let us know she's hungry, or else we have to wake her up within four hours to feed her.  She hasn't consumed nearly what she was supposed to have tonight.  Now they tell us she actually lost weight yesterday, her first day "on demand."  A second day of lost weight is bad, and the gavage tube is threatening to return.  The nurse tells us we "have the right to ask to stay another night" rooming in with her again to see if her feeding improves.  I guess we could ask to be discharged today, but we'd need to rent a scale to keep weighing her before and after feedings.  We are now convinced beyond a doubt that this step was rushed.  Why, we don't know.  But now we are exhausted and angry.  I don't think I can sleep here another night.  Neither Tim nor I slept at all.  But we don't want to take her home too early, either.  If we can't sleep here because we're worried about whether she's going to wake up by such-and-such a time, and whether she'll consume such-and-such an amount, we're not going to sleep any better at home, worried that she'll have to be readmitted.  I'm really angry at all the rushing around we were forced to do yesterday that may have been for nothing.  I cancelled a really important meeting, Tim left his AP conference, we stressed out all day, and why?  Because someone gambled that she was ready when there wasn't necessarily proof that she was?

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