Sorry that it's taken so long to get a new post up. Life got busy at home and then back we came to the hospital for round three! After this we will be halfway through his maintenance chemo treatments!!
Mark hated his ng tube when he got it last week, but he has gotten used to it. They gave him a weighted one so that it is harder to throw up and the tubing is thinner. We spent the next several days working him up slowly from 5 ml per hour of feeds (1 tsp!) to 45 ml by Tuesday morning when we were admitted. He did great that first night, but we did have to drop his feeds down to 25 ml per hour to help with nausea. Yesterday we dropped it again to 10 ml, which is where it is sitting now.
This morning I met another mom whose son has brain cancer - choroid plexus carcinoma. He turns three next week. We are Facebook friends now. His name is Henry - please pray for them!
Mark has been pretty miserable today, but he's not able to tell us what's wrong. Not sure what to do about that. He's been struggling with acid reflux and hiccoughs. They put him on a med for the acid reflux. The hiccoughs are a side effect of one of the new anti-nausea meds they put him on. They're driving him a bit crazy. His potassium has been super low, so they are suplementing that. Nothing so far, though, that should make us have to stay past tomorrow :). Thanks and hugs to you all!