Monday, January 03, 2005

Today I looked back at the links off to the right down there to all the posts from the past week, and was struck by how upbeat all of those first lines seem. The terms "pretty good," "pretty decent" and even "great" are used to describe Will's days. I was a bit surprised at that, to be honest. The past week has been no picnic for Will. Chalk this up to two things. I do try to put on a brave face and be upbeat when I can in these reports. But I've come to realize that Will seems to rarely have an entire day that is bad. There is always something positive in there, something to bring about hope that tomorrow will be better. If his blood pressure is low, then his oxygen needs might be good. If his heartrate is high, he might be peeing like crazy. He struggles, of course -- mightily sometimes -- but I don't usually need to look too hard to find something positive to report.

I bring this up because Will is in the midst of a streak of sorts. Since being tapped Friday around 6 p.m., he has been doing good. Not great, but good. He's been tapped twice since then, but by the time we left him just a bit ago tonight, he hadn't needed to be tapped for more than 38 hours, and he continued to be calm, with a good heartrate, decent blood pressures and reasonable oxygen needs. He's even peeing well again despite the fact that, contrary to my earlier report, they decided against re-starting the diuretic (but may yet start one overnight). Again, we're hoping against hope that the octreotide is working. As it is, they'll hold off on his feeds for two weeks or more after the last sign of that fluid around the lung, so it'll still be nearly February at the earliest before he eats (after already having gone without it for about three weeks). But if he can get past this and start eating again, he'll get bigger and stronger and his lungs will grow and we can start to see some progress again.

I had a dream the other night that we had brought Will home, and our only concern was that we were holding on to him too much. It was one of those super-vivid dreams, where you're convinced that it's really happening and that the things in real life that run counter to it must be the actual dream. It might be the best dream I've ever had, and even though the feeling had dissipated some by the time I woke up, I was filled by such joy at the prospect of having him home that it was tough to go back that morning to see him in the NICU as usual. We want so much to get him home that it hurts. A few more days like this, where the reference to good things in my post is about the entire day and not just a small part of it, put us that much closer to realizing my dream.


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