Thursday, June 11, 2015

Eat, Janey, Eat! Part Nine

That's about the size of it---working all the time to get any food into Janey. We can think about going home once she eats a little more than she is now, but she is very non-interested in food.  Just now, as I started to write, we had a little breakthrough.  Tony got a long thin loaf of fancy bread at the Whole Foods near here, and Janey is holding it and taking mini-bites.  She actually asked for it when we thought she was done and took it away.   It's the first she's really eaten without being seriously urged.  This morning, she ate a slice of onion---one of her favorite foods, and she's  had a few slivers of salami.  But that's about it for today.  That isn't enough.  She is getting some breaks from the round the clock nutrition by IV, to try to get her hungry.  I know she will eat in time, but I wish it would be now, although I know she is regulating herself based on what she feels like she can stand.

Otherwise, she is mostly okay.  Today is the last day of her antibiotics---day 14.  It's hard to believe this is day 15 overall in the hospital.  In today's drive-through hospital stay world, that's a long, long time.  She is walking with a lot more ease.  She does still have diarrhea and quite a rash in that area, but her digestive sounds are good, and two of her three drains have been taken out.

That's the physical part.  As Janey gets feeling a bit better, it's getting harder to keep her happy here.  Part of how we knew how very sick she was is how easy she was to care for, when she was sleeping huge parts of the day, watching TV listlessly and just not fighting anything.  Now, she is getting bored, I think.  Thank goodness for the iPad.  For years, we resisted letting her use the iPad as an alternative TV.  The iPad was the device that was supposed to change autism, to teach Janey to communicate, to learn!  I put all kinds of educational programs on there, "fun" one, but I didn't show her that she could watch YouTube on there too.  Well, of course that is no longer the case.  We put on YouTube Kids, a great program which allows her access to a filtered YouTube, and she is watching it around the clock.  She loves the control, so she can watch as little or as much of a show as she wants.  I've tried to show her how to use the voice search, but she doesn't like to talk on demand in that way.

I have a million thoughts about the hospital experience and autism, especially ones comparing this stay with her stay last November as a boarder waiting for a psychiatric bed.  But I've decided to wait on writing more about that until she is home, because I need a full perspective on the stay, and because right now, my main focus is on getting her better and recording the steps that are leading us to that.

Thank you for reading, for your love and thoughts and prayers and support!  We have needed and will be needing it badly!

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