Coming home Jacob started going into another pain flare. Two days home and he was crying in pain, begging for a doctor to help him. Unfortunately, there was no relief. We tried a medication which his body reacted to horribly. Once I finally got a hold of his doctor in Cincinnati the decision to pull him off all foods was a fairly easy one. But then there was the next step, find someone local who would insert a NG feeding tube so that Jacob could ingest the required about of formula day.
Well, over a week later. We still do not have the NG. Jacob's pain flare has now subsided. I was told by a hostel resident today that there are no beds available and won't be until next week. So in the meantime, we are trying to get him to eat and praying another pain flare doesn't start.
You begin to feel like you're isolated in this. There is no one out there who really truly wants to help and now we are left to our own means of helping Jacob manage.