Stuck between a Rock and a Hard Place

Avery is still struggling with pain and we have not found any simple solution to get him comfortable or some decent sleep.  I just can't even imagine how the kid is functioning.  But when daddy came to give me a break yesterday, that sure made him feel better for awhile b/c little man was just cracking up and sooo excited to see his daddy.  It was very cute ;)

So they have literally xrayed just about every part of this kids body to look for any broken bones, ultrasounds of the whole belly area were all negative, no gallstones or kidney stones.  It all still bring us back to what I originally said which it is his gut.  Well nobody likes that answer b/c there are no simple solutions to that. 

The attending GI dr. has been seeing us all week and he is the guru of motility stuff (gotta say I am NOT impressed though).  Anyway, he has gone back and looked at all of Avery's gi studies since 2006 when he just had a g tube (in his stomach) and all his anatomy looked normal.  But the studies changed over the last two yrs since he has had his gj tube.  He believes that the j tube (in the small intestines) has literally twisted his intestines and it can be causing him alot of pain and obviously trouble with his feeds.  Now this is good in one way b/c if the intestines go back to the way they were then maybe he can tolerate feeds more.  BUT..... the solution totally sucks..... (see image below)

Solution: take out his gj tube and just leave him with a g tube.  This is bad because we know his stomach does not work at all.  We would still have to give him medications that he needs and can't be converted to IV in his stomach which we believe it will not be absorbed.  So it is kinda pointless to put anything in his stomach.  One of the meds. he needs for his spasms so it is pretty important.  This would also mean that he would have to have his narcotics in the IV form which would be VERY difficult for us to get at home.  I do NOT plan on staying in that hospital until his intestines go back to where they should be which could be a couple of months.  So you see our predicament!!!!!!!!

I am hoping as Monday rolls around and the regular team of drs. are around that they will have some better solutions b/c I sure don't like the one that is on the table now. 

I have to say it was REALLY nice to go home and finally get a good night of sleep.  My mother in law who is a saint whipped up one of her dishes and we had a family dinner here.  It was sad not to have Rick and Avery here though.  I also got some baby holding time in :) Janessa and I went to visit our good friend's new beautiful baby girl.  Janessa sure did not want to put her down.  Meanwhile Isaiah is having a cycle at home.  Poor kid.  MITO SUCKS for sure.

I will keep you all updated as our plan changes.  Thanks for reading