Sinking In

We've done a little more reading about James's hearing diagnosis from yesterday, and the literature seems to give a less optimistic view of the condition than the doctor did. Specifically, hearing aids don't always work, because the neuropathy causes problems with speech perception (especially understanding words when there is other noise). There seems to be a very wide range of outcomes. I'm not sure why the doctor was more optimistic than the articles we read; I think he's someone on the cutting edge of research in this area, so I don't know if he was just trying to be reassuring to us or if he actually has had more success in treatment than previous work would indicate.

We're still a bit in shock over the whole thing. All of the digestion and ostomy issues were (and are) hard to deal with, but at least there was presumably a light at the end of the tunnel when they would resolve. But this has the potential to be a lifelong serious disability. Right now it feels like there's a dark cloud over everything; there's a cold feeling in my stomach that won't go away, and our hopes for some kind of normal life seem like they're being shattered.

Mike rightly points out that even if we don't have good outcomes for his hearing per se, there are likely to be technological solutions -- voice recognition software and the like -- that can go a long way in helping James. And medical treatments are constantly advancing, so we don't know what might be possible five or ten years down the road. In the meantime, we're going to keep talking to him just like always (because maybe something is getting through), but we're also going to try to learn about other ways we can help him and communicate with him.

One thing that makes me sad is that I feel pretty confident that he could hear at some point in the hospital. Even when he was only a few days and weeks old, he would regularly open his eyes at the sound of my voice. His nurses tell us that he startled in response to loud noises, and we all thought that the music on his mobile seemed to calm him. So I wonder if he lost his hearing somewhere along the way. Or if not, it makes me sad to think of all the times we talked to him and read to him and soothed him and it wasn't getting through to him.

On another topic, the lab results for yesterday were improved. His direct bilirubin was down to 3.8, and the other liver function test was also improved. His sodium is still on the low side, though, so we'll be giving him a higher dose of that. (Apparently it's not uncommon for people to lose sodium through a stoma, and the Diurel for his blood pressure can also cause sodium to be washed out.)