Home...

Hopefully it will last...

We are home!!   Devin is free of belly pain, but has pretty significant diarrhea.  This might make it hard to manage him without IV fluids.  His lab work has improved today, but keep in mind that was after 2 fluid boluses and maintenance IV fluids all night.  So far all his viral studies have been negative... which is good and bad... good because viruses can be VERY harmful to a transplanted bowel... and bad because it has opened the door to the MOST dreaded word in the transplant world... REJECTION...  For now we sit and wait!!  We pray it's just a little GI bug that needs to work it's way out.  I'm almost sure that if by Tuesday or Wednesday their is no improvement Georgetown will want to do a colonoscopy ASAP.

Tomorrow my local GI doctor will be back in the office.. I am hoping to have things more clearly defined.  Although everyone at RWJ was super nice and extremely accommodating!! He is complex!! and the world of bowel transplant is NOT something many doctors are comfortable with.

Please pray things turn around!! He is SUPER upset over school!!!  That is his WORLD!!  I promised him that if he improved maybe we'd talk about half days.. physically he is not up to full days he is sleeping a lot.