Sunday afternoon

Things continue to progress. He has just received his first dose of his drug by mouth (well, actually through his feeding tube in his nose, but let's not split hairs) instead of by IV. There is talk of removing his pic line today. The IV in his hand is already gone. So the two things standing between him and a trip home are his oxygen and his feeding tube. He continues to feed pretty well, but is not consistently having a full meal at every sitting. He has missed a few entirely because he won't wake up and at a few others he has drifted off to sleep after about 1o minutes. At this point, we have Thursday in our heads as the earliest possible day that he will leave here. We are being allowed to stay in the sleep room through Wednesday night, which is great because it means Robyn can breastfeed him all day and night.
A discharge for him in no way implies that his problems are solved. It just means that they expect that he will be able to do at home what he can do in the hospital... eat, sleep, poop, grow, and sort out the misfires in his brain. It would definitely take us a while to be comfortable with the thought of going home. Here he has his heart and breathing and oxygen monitored around the clock. We never know that something is wrong just by looking at him... it is always the monitor beeping that lets us know that his oxygen saturation has dipped below 88%. But hopefully he can be taken off his oxygen and feeding tube in the next two days and have one or two days here without them so that we can feel comfortable. We are confident the doctors are not going to toss us out without ample instruction and preparation. I'm sure they will provide more clarity about the process in the coming days.
The neurologist was by this morning. He said that Finley is still hypotonal ("floppy" for the layman). We are seeing some improvement in that area, we think. And a physical therapist is supposed to visit tomorrow to check him out and give us some things we can do to help him. The more concerning thing the neurologist said was about Finley's EEG. He said that his brain activity is "not horrible" (direct quote). I asked for clarification and he said that Finley's brain waves were not always as crisp as they should have been when he was being monitored. We had not heard that part before, so it was a bit of a shock. But he said, as he has after almost everything he has told us in the last week, that we don't know what the long-term ramifications of that are, if any. My theory is that Finley is a supergenius/elite athlete/gifted artist and that many of his brain waves would not be detected by an EEG set to "normal". I didn't bother sharing my theory with the neurologist... for now.
For those keeping score, I had a shower this afternoon and did not miss anything important.
Lots of love,
Fin and Fam

A couple more pictures of yesterday's bath. That is "the juice nazi" (Amiee - we love her) giving him his bath.