The good news is that I now understand how the fat, pleural area and lymph systems and everything else are connected in what is ailing Will. The bad news is that I was able to reach this understanding after having a long discussion about the issue with Will's doctor after they tapped him again tonight.
Once again, Will was doing great early in the day and then took a downturn that left him needing about 80 percent oxygen or more by the time we came in for our evening visit. A chest x-ray showed that Will's lungs were not working so well again and that the fluid build-up was back. The attending physician, Dr. Dagle, came to take a look at him and they decided they should tap it again. They did, and now he's breathing much better and his most recent x-ray was much better.
We had the chance to talk with Dr. Dagle extensively about what is happening with Will. We've been able to do this before, obviously, but in the meantime I'd spent some time reading up on things on the Internet by punching the few key words that stuck in my head from previous discussions into Google. I figured out what was going on, and Dr. Dagle filled in the holes and I now understand it much better.
Will has what is known as chylothorax
. The link offers the best explanation of this I've found thus far, though it deals with a small child rather than a premature baby. You'll need Adobe Acrobat to view the page, but it's worth it. In a nutshell, the doctors are convinced that Will's PDA ligation of two weeks ago caused some irritation or trauma to his lymphatic system, either the lymphatic duct or any of the series of vessels in the system that carry cells and fat and other things throughout the body. This trauma caused the leakage of fluid, which, over the past couple of weeks, built up to fill the pleural area around the left lung. There are different types of such pleural effusion
(again, these links deal with big people, and often with illnesses that Will isn't dealing with, so only take nuts and bolts from these sites and don't focus on the bad stuff, OK?), and the one they're certain Will has is chylothorax. This chyle is created by the digestive system when it digests fatty foods. Will hasn't had many fatty foods (or any foods) lately, so the fluid is really more lymphatic fluid than chylous fluid. The reason he is not getting food is because the fat in that would basically travel right up the lymphatic duct and into the pleural area, causing even more problems. So, they continue to just give him his nutrition through his IV line.
I had written earlier about the possibility of a chest tube, and that possibility is still there. But Dr. Dagle was encouraged by the fact that it took 36 hours for that space to fill this time, where before it was 24 hours. If Will continues on that trend line, it would seem to indicate that the leak is closing on its own. If not, they'll probably insert the tube and then we'll be dealing with a more long-term thing. Otherwise, they'll tap him as needed. It will still be a couple of weeks before he can eat, because they don't want to give him fat and have that somehow restart the leak. We've been here before with his PDA
and know it's better to just get a problem behind him.
As with everything, there are other possible explanations for this. Babies can have congenital problems that lead to this as well, but Dr. Dagle said Will's age and the fact that this happened when it did and where it did make him fairly confident that it is related to the PDA ligation.
There are signs of progress. His first chest x-rays showed his lungs to be whited-out, which mean they weren't inflating. During his good stretch a couple of weeks ago, they were darker, showing that they were slowly getting better. Tonight, before they tapped the fluid, his x-ray again looked more whited-out. The x-ray taken immediately after they tapped him showed the lungs to be darker; when given the chance, they work pretty well considering he still is dealing with significant lung disease.
So, we wait, and hope that this resolves itself soon so he can get back to growing and getting better. I've run out of rollercoaster metaphors for the time being, but suffice to say that you never get used to the feeling you get when the door slams shut on that small sliver of optimism you'd let creep in. This morning I let myself think he'd turned the corner, but tonight I accept it for what it was -- a short good period where Will wasn't struggling. He's in another of those right now, breathing well again and resting quietly. Tomorrow might bring another hurdle; knowing Will, tonight may bring one. But these quiet moments allow him to recharge and gain the strength to push through. The best that we can do is follow suit.