I just got off the phone with Eve's mito doctor.  He said to look at this decline from two perspectives.
1. Because she wasn't getting the proper nutrition (maybe because she wasn't able to eat well due to her muscle weakness), we saw a rapid decline in gut function.  Once she gets the proper nutrition, she may bounce back to a degree and regain some functioning/skills. 
2. This decline may be neurologically based and evidence of disease progression.  If that's the case, there is nothing we can do other than to make her comfortable.  He confirmed that this is a serious situation.

I reminded him that never in her life has she regained any skills that she has lost.  I am not trying to be pessimistic, but rather realistic.  He suggested that eve see one of three motility doctors in Boston.  I'm going to call the GI doc today and tell him about this conversation to see if he can facilitate a quick appointment.  A motility doctor can prescribe a medication that can improve motility in upper or lower gut.  This can help with her nutrition in scenario 1.  He also said that we could put her in the hospital for a week on IV nutrition.  If we see an improvement in her functioning (i.e., if she becomes the kid she was before this decline and less disconnected), then we know it's a nutrition based decline.  If there is no change in her, then we know this is disease progression.  He felt this would save us months and months of intervention and would give us a quick answer.  I'm going to talk to the GI and see what he thinks.  I think I'm not ready for another hospital stay.  I asked the mito doc if we could see how the j-tube feeds go a little longer.  He said that's fine.  If we can get her up to her optimal intake (we are 80% right now), then that would be the same thing. 

If we find that this is a neurologically based decline, we would put her on the j-tube nutrition that she can tolerate.

I just got a call from the school nurse.  Eve has been retching all morning.  I had her stop the j-tube feeds and flush the tube.  I have a call in to the GI and am waiting for him to call me back.