Sunday, December 26, 2004

Will's chylothrorax continues without slowing; if anything, the flow of lymphatic fluid actually is increasing. So, they've decided to start him on a new treatment. It seems they expected it to slow down by now -- usually keeping a kid from eating does the trick -- and because it hasn't they want to try other avenues rather than wait the days or weeks it might take to stop on its own.

The medicine they plan to use is octreotide. (Note: the page this takes you to is Google's cache of the article in question. The page requires registration to view it, but I found this back door to save everyone the trouble of signing up). It's a fairly experimental treatment because its use in an instance such as Will's is still relatively new. As those who read the entire linked article can see, however, the response to those treated with this medicine has been almost overwhelmingly positive.

Octreotide does have side effects. For Will, the effect they'll watch most closely is a lessening of blood flow to the digestive system. They'll keep an eye on things to make sure they keep on top of any problems. He isn't eating, so there isn't the worry that he won't be able to digest food, but it can cause more long-term problems if left untreated.

The good news, however, is that the medicine has typically kicked in quickly and dried out the lymphatic leak. If that is the case with Will, he would be able to eat sooner and get on the mend. In some cases it takes considerable time to heal, however, so we'll just need to wait it out. We've found that Will operates on his own schedule. At times, it has seemed like he likes the challenges presented when the doctors talk about odds. The odds were against his PDA reopening after indomethacin, the odds were against a lymphatic duct tear after the PDA ligation, and the odds were against the leak lasting as long as it has. So, when they say the odds also are against the octreotide needing very long to work, we wonder if that isn't just another way of saying, "it will take quite a while to work on Will."

So, they'll start that this afternoon and see what happens. Meanwhile, his oxygen needs remain low, they're on top of his fluid loss and replenishment much better now, and his heart rate and blood pressure have both been much more stable. All good signs, and all indicate that if he can get this leak closed, he'll be back to what he's here to do: grow and get better.


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