The team meeting was pretty extensive focusing on how to better make Avery comfortable. They thought he looked much thinner and more pale :( We are trying to figure out what meds are working and which ones are. He has so many big meds. on board and we are trying to narrow the list down and find the most effective ones. Valium is one of our newer ones. They also are concerned that he may have a malabsorbtion problem which may be causing him to be so resistant to meds. I mean the kid is only 23 pounds and is on some adult doses with little effect.

We also talked about TPN and how I just feel that I am not ready to throw in the towel and say he is TPN dependent. There are many tests that have NOT been done yet to rule out things. I am getting REALLY frustrated with GI b/c they are just dragging their feet. They see a kid like Avery and act like the want no part of him b/c he is so complicated and not cut and dry. Sometimes the most basic tests can be the most helpful. KWIM?

Today he was slightly better in terms of not screaming but still showing obvious signs of pain and a bit sedative. We are giving it a few days and seeing if the med changes are making a difference. I want to start discussing converting some of his meds. to IV to see if they are more effective. We may have to go inpatient for something like that b/c the pallative team does not seem comfortable doing this at home. SO we still have a Loooong way to go.