Saturday, August 05, 2006

Reality bites

Yesterday Maggie and I had a 'care conference' with a pulmonologist and a neonatologist and an NP about Woody's condition and the long term prospects and approach to him. This meeting was originally billed to us as an opportunity to meet the pulmonologist, who will be a key figure over Woody's next two years or so, as he is the specialist who deals with the development of his lungs and his chronic lung disease, but morphed into something that at the end felt a lot more like an intervention than a meet 'n greet.

The general prognosis for Woody remains positive. As they told us, the fact that we're talking about the issues that are in discussion is great, as kids in Woody's position (born at 23 weeks) are not usually alive (they said that of 10 kids like him born, 7 or 8 of them are dead and most of the rest are facing problems that are more debilitating than he's looking at). That being said, Woody's lungs are very sick, still, and it is the general opinion of the pulmonologist that his lungs are not going to be healed up enough, even in three or four weeks, to be able to survive an extubation.* Given his stage of life and the brain development levels, there are some big problems with keeping an endotrachial tube (ET) in his throat over the short term: first, there is the danger of damage to his subglottal area, which is problematic because surgical repair of this area is pretty major. Second, there is the risk of damage to his vocal cords by continuing to have him intubated. Finally, there is the ongoing risk to his development by preventing him from learning to suck and swallow and all the other things that he needs to be able to do with his mouth that he will not be able to do with the tube in. Adding in the risk that he will develop an oral aversion, which will make feeding nigh impossible without a long term feeding tube, the prospects of leaving in that tube as long as it would take to make a good run at an extubation are not favorable. The net recommendation, to boil down to the essentials, is to do the tracheostomy.

Of course, the fact that he's more likely than not getting eye surgery next week will throw a big monkey wrench into everyone's plans; the trach first, ask questions later strategy (extending my terms from a couple of days ago, I'll call it Track III) can't happen if he's going to surgery next week. In fact, it couldn't happen until, at the earliest, a week and a half from now. At that point, the whole analysis could change, if he figures out how to get rid of his CO2 better.

The other bombshell dropped on us was that Woody isn't coming home until, minimum, a couple of months after his due date (September 9). I had always thought that he would be out by late October, so this was a mild surprise. But, I have to admit, this was not something that I am terribly unhappy about-- I mean, consider it from my perspective; how scary is it going to be to bring a baby as sick as Woody home? Adding in the prognosis that his entire respiratory future may be decided by how healthy we can keep him the next two years, while his lungs finish developing, and the pressure is going to be severe (which is, I suppose, a roundabout way of pre-apologizing for shunning everyone, especially those with small kids, for the next couple of winters).

In short, the conference revealed some hard truths about Woody. I find it pretty helpful to consider the good news, such as the fact that his brain and neurological system has remained remarkably free of the common insults of preemie life. But we need to be prepared for a pretty rocky short term anyway. Of course, we are also aware that no one knows exactly what's going on with him; when we came in to visit today we saw a note from the other pulmonologist, who saw him earlier today, and it unequivocally noted: "make one more extubation attempt." Oh, well. I guess we'll figure it out.

*The O2 processing is one thing, and it's not the problem. The problem is the CO2 purging. He can't get his base levels of CO2 down below around 70 even with vent support, and without it they just inch up every day. As long as that remains true, the doctor thinks he isn't going to make any extubation attempt.


At 9:27 AM, Anonymous Aunt Susan said...

So sorry about this latest news. I so admire your attitude in this process. Going home with a sick baby WOULD be a scary thought. But I know that staying in the hospital must be...making you crazy!!! Either way, you are smart and courageous. We are all still out here with you.. thinking of you constantly.

At 11:46 AM, Anonymous jared said...

Go with the flow and spin it positive. I look forward to perhaps getting sneaked into visiting hours to see Woody next month.

At 11:17 PM, Anonymous swright43 said...

You are part of our Sunday evening prayer...our family prays for all three of you each and every day. You are part of our lives and we thank God for the privilege. I look forward to meeting Woody one day.
shelli wright
chapel creek church


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