This Crazy Life

We’re on our fifth stay since the middle of May.  It’s literally been a week in, a week out, a week in, a week out, 2 weeks in, a week out, a week in, less than a week out, and now we’ve been in for 3 days.  We’ve gone from food to a feeding tube for additional nutrition on top of food.  To only a feeding tube with bolus feeds, to a feeding tube with a pump to now she’s refusing the tube and eating food in the hospital, which is fine in the hospital, but it won’t work at home.  It won’t.  It doesn’t.  I don’t know what we’re going to do next.  I thought we had a good plan.  Last time she was in the hospital I was suspicious that she was watering down her ensures.  I made the rule they had to be opened and poured in front of an adult.  She didn’t even complain so I thought maybe I was wrong.  But then we went to full feed with the feeding tube and bottles are very much opened when she pretends to open them.  But you can’t get close enough thanks to OCD to check the bottle and you definitely can’t touch the bottle.  And we can’t keep her out of the hospital long enough to work on the OCD.  We’re stuck in this vicious never-ending cycle.  I was just out of the country (on a much needed vacation with my 2 other daughters, that was supposed to be a family trip – more on that later) and I was going to enforce me opening them when I got home.  I thought it would be too much for dad and grandma.  But she was back in the hospital before I got home.  And now she swears she’s going to eat whatever we cook if she can watch and she’s going to eat food.  I know she wants to.  I know she wants to more than anything in the world.  However, just the day before she was admitted to the hospital she was crying because her grandma ate a bowl of soup in the house.  It was that distressing for her.  Someone else eating a bowl of soup.  But she’s going to eat whatever we serve her.  So, I guess we’ll give it a try.  And see how it goes, and I’ll keep you updated!