The bile output has improved somewhat. Some nights he barely puts out any, and some other nights he still puts out quite a lot. The GI doctor called and wanted him to get some bloodwork done to make sure that he is not becoming dehydrated from the increased output. He had just gotten bloodwork the previous week (ordered by his physiatrist, update on that appointment coming up) which I had not heard the results of yet. I had to think if it would be quicker/easier to call and get the results of the other labs or call to get an order for the new labs and get those done. I decided to just get the new ones. Unfortunately, the results of those have not come back yet. We also stopped the baclofen to see if that was causing the bile. I don't think that was what was causing it, because it is still there. We will see him Tuesday, I expect he will want to restart the baclofen.
The psysiatrist appointment was good. She was also concerned about his bile output which is why she ordered the labs, which we still have not heard about. She thinks he is getting too chubby again...at least too chubby for a severely physically disabled person. So she cut his feeds, and now he is only getting 750 calories/day. It seems like such a small amount, but he really does not have problems gaining weight. I also recently read that one of the meds he is on can cause weight gain, so that could be part of it too.
She also wrote an order for him to have a bus and classroom with AC during the hot months since he is so sensitive to the heat and can not regulate his temperature well. She wants us to keep track of his HR and BP at the times when he has his overheating problems. So we got a blood pressure cuff for him. Unfortunately the one they sent us is the manual kind that you need a stethoscope for. He is way too wiggly and the tone in his arms makes it pretty difficult to take his BP that way, plus my stethoscope is not that good. I think we will have to get an automatic one.
