OK, I know this runs counter to everything I've written here the past few weeks, but Mary just called with big news in Will's world: He's going to eat again. Today. Breastmilk.
With the effusion pretty much dried up around his lung, they think it's OK to start feeding him a little bit. Not only that, but they're going to start with breastmilk rather than Portagen, as previously thought. The main reason for starting the feeds is because his liver isn't functioning the way they would like. That's a not-unexpected side effect of not having eaten for the past month. They can give him medicine to kickstart those functions, but the one they really want to give him can't be given unless he has something in his stomach. So, it sounds like they'll start him out on 2cc of breastmilk every six hours, and will see how he deals with it. If he's OK with that (meaning both that his digestive system kicks into gear after being on hold for a month and that the milk doesn't cause his pleural effusion to restart), then they'll perhaps progress a bit in the quantity and frequency of his feeds and start some of the medicine that will help get his liver function back on track. They think breastmilk will be OK because it doesn't have many more of the long-chain fats than the Portagen, and with the chest tube in they will be able to tell immediately if it is causing a problem. I apologize if this sounds a bit vague, but I'll be able to flesh this out a bit once we get a chance to talk more with the doctors.
And to think I had been remiss in posting today because I was sure people would tire of the ceaseless fawning over my incredibly shrinking son! On that note, he lost another 35 grams today, with not-so-dramatic results in terms of his appearance. He continues to be stable in terms of his breathing and everything else, which puts him on the way toward having one of his longer good stretches to date.
With the effusion pretty much dried up around his lung, they think it's OK to start feeding him a little bit. Not only that, but they're going to start with breastmilk rather than Portagen, as previously thought. The main reason for starting the feeds is because his liver isn't functioning the way they would like. That's a not-unexpected side effect of not having eaten for the past month. They can give him medicine to kickstart those functions, but the one they really want to give him can't be given unless he has something in his stomach. So, it sounds like they'll start him out on 2cc of breastmilk every six hours, and will see how he deals with it. If he's OK with that (meaning both that his digestive system kicks into gear after being on hold for a month and that the milk doesn't cause his pleural effusion to restart), then they'll perhaps progress a bit in the quantity and frequency of his feeds and start some of the medicine that will help get his liver function back on track. They think breastmilk will be OK because it doesn't have many more of the long-chain fats than the Portagen, and with the chest tube in they will be able to tell immediately if it is causing a problem. I apologize if this sounds a bit vague, but I'll be able to flesh this out a bit once we get a chance to talk more with the doctors.
And to think I had been remiss in posting today because I was sure people would tire of the ceaseless fawning over my incredibly shrinking son! On that note, he lost another 35 grams today, with not-so-dramatic results in terms of his appearance. He continues to be stable in terms of his breathing and everything else, which puts him on the way toward having one of his longer good stretches to date.
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