Tough days. 1 week 5 days old.

Another day, another drama. This morning we slept in until about 8:30, and when we went down it was to see that the oxygen exchanger - his ECMO lung - was leaking. A yellowish foam was coming out of the base of the exchanger at a leisurely rate. Apparently, this happens when the filters get old. So they changed it out for one that is typically used for adults - a square box that does the same thing. They didn't use that earlier because it is harder to wean Pat off of the larger one - the larger size makes fine control more difficult, or something. Neither Pui nor I missed the implication that they expect he will be on ECMO for some time.

In some ways, the leak was good - his swelling has gone down dramatically, so he looks more like he did before surgery. Previously, his ears were being squenched together as the skin around them swelled. Now his ears stand out from his head and are fanned out like they should be. I never thought I'd be so happy to see ears.

In most ways, Pat appears to be remaining stable. His chemistries are consistent, his lactic acid levels are hovering around 7 (a high level, but at least it isn't jumping up off-scale), and his electrolytes etc. all appear to be good.

The main worry now is his neurological health. He's been off that paralytic medicine for a day now, but still hasn't moved. They suspect he isn't clearing it, so they aren't very concerned about that yet. They have reduced his morphine as well, because it can block neurological responses also. They are also worried that his pupils aren't responding to light, and they have contacted the Neurological team and scheduled another C/T scan of his brain.

It's a difficult time for Pui and I. I think we soured breakfast for a lot of people in the cafeteria as we tried to accept that Pat may have irrecoverable severe brain damage. He hope he doesn't, but as time goes by the odds diminish. On the way to breakfast we met a woman whose 6-year-old had walked into surgery, and now would definitely never walk again, might not ever move again, and may not even survive. We talked for a little while, and agreed we were all in a difficult place. I don't know if it's better to have a newborn in this situation or a child you had been with for years. I don't think it really matters - we're parents with desperately ill children; there is no better way to be in this position.

All we can do is what we have been doing: wait, hope, and shower Pat with love and support.