Things have been pretty much unchanged in terms of Avery's reflux issues. Although he has slept pretty decent the last 2 nights, I should whisper that though. Some days he spends being super fussy and others he is okay but has a major problem with getting his meds (which is an issue). Whenever he gets his meds which is at least
4x a day, he turns pale white and starts retching and vomitting and then gets junky.

At this point, SOMETHING needs to be done. I have thought about things alot and discussed with the experts (other moms) as well as pallative care. For Avery, the decisions we are going to have to make are just going to get tougher and nothing is going to be a fix, just more of a bandaid. It is so depressing when you really think about it. I think the least invasive thing to do is to put him on TPN (IV nutrition) at night. He really needs some gut rest and this will do it for him. Hopefully just giving it at night will give him the break his gut needs. My worry is needing it fulltime which can damage the liver overtime. We are just going to start there and see how he does. It will be good b/c we can convert some of his meds to IV form which may be more effective.

I also sat down with the pallative home nurse and we are going to make a home protocol plan as well as an ER one. This will hopefully help us avoid a hospital stay and possibly the ER. The more he is home the better as far as I am concerned. They are very impressed with how well our family does given the circumstances which was nice to hear.

We should be going inpatient to start the TPN and get the ph probe (tests the reflux). We all will need alot of training.

Rick and Janessa are serving at the homeless which is really nice.