Staying ahead of the curve

Woody's had quite the active week, characterized by more phlegm balls than usual, more movement on his oxygen needs than usual, and more activity to go with it. The last few days he has been quite the thrasher*, and this has led to some concern about him self-extubating soon.

Let me back up just a moment, to Tuesday's post about wanting some consistency in his care. I did not mention it at the time, but the precipitating factor there was the discussions surrounding whether or not to start Woody on a particular nebulizer-delivered steroid. My position then (and now) is that I don't want him being on extra drugs, especially steroids, unless there is an articulatible goal that the care team is hoping the drug can help him achieve. This position was reinforced by several professionals early in his care that warned us about the temptation to give him too many steroids, especially when what he needed initially was just to get bigger and stronger.

None of this is to say that either Maggie or I are against drugs that are likely to help him out. On the contrary, we just want to make sure that he's getting the drugs he needs and not a bunch of other drugs that he doesn't. The steroids, for example, are definitely something he WILL be on, and specifically we know that he will likely need them as he gets closer and closer to extubation. And yes, now we're back full circle.

As the doctors and nurses have noticed his increased activity and decreasing tolerance for the annoying tube that is omnipresent in his throat (and how would you like it, I wonder, if you had to go through life with a plastic tube shoved down your throat and into your lungs?) the threat of his imminent extubation has begun to be something that is always present. At that point, the question becomes what to do if that happens, and the decision has already been made: if he pulls his tube this weekend, they're putting him on the CPAP and seeing if he can handle it. And thus, the decision calculus shifts. While I didn't like him being on the nebulized steroids earlier, because I didn't see that it fit into the stated plan, it now seems very intelligent to give his lungs a bit of a head start should he pull the tube. Moreover, we may go with larger systemic doses of steroids (the so-called 'burst' method as a way to get some rapid improvement) as early as next week in preparation for a planned extubation attempt. So we're just staying ahead of the curve now, and I'm okay with that.

He's now up to 1290 grams. Big and fat.

*Think "head banger".