Unfortunately, there is not much to update over the last few days, which actually is probably a blessing. No news is good news! Elias is still having some discomfort issues and we just can not pin point the source. They started him on the Farrell Valve Bag which vents the G-tube and relieves gastric pressure. It seemed to have a beautiful effect the first day we used it, but the rest of the days his discomforting symptoms returned. If nothing else the Farrell Valve is assisting with controlling his emecis and reflux issues, which have diminished in frequency. Our biggest challenge with all this is trying to get Elias on a daytime schedule. His night schedule is beautiful as he sleeps through the night, waking briefly for wet diaper change and quickly back to sleep. During the day however is completely different. We spend time playing and working on things like sitting up and building head control and other forms of stimulation, but when he gets tired he refuses to go to sleep. He lays there rubbing his eyes and moving constantly as if trying to get comfortable. There are times when he will go 12 + hours without sleeping. This might be why is night schedule runs so smooth. Otherwise Elias enjoys the playing and the interactions. His mobile was angled the other day so the hanging animals were low enough he could reach out for them and apparently the mobile kept slowly moving like a clock hand from 1 to 3 landing gently on Elias. He laughed and laughed and just looked as though that was the funniest thing. He had this look on his face that said "AGAIN!" That was cute.
As you may or may not be aware, our nursing agency effectively gave us a two week notice last Tuesday. We had already began searching for a new agency anyway, but it certainly made the search more stressful and hasty by having the timeline. We dismissed our Wednesday nurse after last week, which is explained in our home health blog (email us if you need an invite). So Katharine and I are taking shifts the next three days to cover Elias 24 hours a day. The fun part is Katharine is having to work also, making this an exhausting venture for both of us. So if you do not see any updates for a few days you will understand why.