May 3

Hi Everyone!

This past week was one filled with frustration. No changes were made to Jett's diet and it seemed as if we were not making any progress and getting no answers. My social worker finally set up a meeting with the team of doctors that are caring for Jett so we could ask questions and get an idea of what is next.

The meeting was very informative and we found out info that no one had even mentioned before. As I described earlier, Jett's lower intestines seem to be blocked as well. The mucomyst they gave him did help break-up some mucus but it seems like there is still an obstruction. Next week he will undergo more testing which will be crucial to his overall prognosis. If the lower intestines is patent and working, Jett will stay in the hospital longer so they can begin using this portion of his bowel to help absorb nutrients. If the lower intestines is blocked by something like scar tissue or damaged bowel they will probably allow him to come home with the IV nutrients and wait at home until they do surgery to put him back together. It will not be until that time until we know exactly how much bowel he will have and if he can survive with what he ends up with. The doctor did mention that he may be a candidate for a multi-organ transplant if he doesn't have enough functioning bowel. Again, this will not be determined until after his surgery down the road.

So now we know a bit more what we are looking at for the future.It's still a waiting game which is so difficult. We have been waiting to know his outcome since our first ultrasound back in September. Please pray for his little belly to heal well and for the studies next week to show plenty of working bowel.

love to all!

liz