Stuck

Jules isn't getting better. The UW doctors don't have any new ideas. They told us in rounds they are worried about him --  he is now one of the sicker kids on the unit with chronic lung disease. They don't understand why he did well after birth, but then got worse. We can't leave him the way he is because it is dangerous for his heart. But, they don't have anything left to try to help him. The pulmonologist from Children's didn't have any ideas today either. So, we (scott and I, the UW staff, and the Children's hospital pulmonologist) are having a family care conference on Monday afternoon to try and come up with a plan for Jules. Scott and I are feeling pretty sad and discouraged tonight.