Will is doing a bit better today; he needs less oxygen than he did last night and his blood pressures have been better. Neither is going to get him a gold star for the day, but progress is nice. The good news, though I'm highly skeptical of it, is that the doctors think his chylothorax has pretty much resolved itself. I find that hard to believe when the output seems to have been increasing, not decreasing, over the past few days, but they're the ones with 14+ years of medical experience as opposed to my 83-day intensive course, so I'll defer to them for now. They're going to wean him off the octreotide in the next 24 hours and then watch to see if the effusion increases. I absolutely want to remain positive about this and I certainly hope they're right, but after watching them restart his hydrocortisone and nitric oxide, and watching them increase his dopamine last night to what it had been on Friday before they weaned it Saturday, I'm going to need to see sustained proof before I'm convinced.
The strangest thing is Will's weight. We were here until 2:30 last night, so we were able to see many of the things that normally transpire while we're home asleep. We've helped to weigh him before, but this was strange. While I lifted him off the bed, his nurse gathered up all of the things attached to him and then zeroed out the bed (they do this, then set him back down so that he's the only new element to be weighed. It's the only way to weigh a kid with medicine pumps, chest tubes, IVs and other things in his bed with him at all times). Each time I would set him down, his weight would register somewhere between 2100 and 2300 grams. That's up from 1871 yesterday. They settled on 2300 some odd grams, which means according to their calculations he put on about 400 grams yesterday. Remember, a pound is 453 grams and he dipped below that in his first week briefly, so you can see it's quite an amazing weight gain. Though he looks miserably puffy (his skin is stretched so tight in places that it is shiny), he doesn't look that puffy. Regardless, he really needs to get that fluid off. It's no wonder he's having trouble getting his lungs to inflate when he has that much fluid around them. So, they're limiting his intake today, continuing to give him diuretics and hoping that he'll start peeing good again.
Sound familiar? Save for the change in his chylothorax, this probably sounds exactly like what I wrote last Monday. I'd check myself, but it's too depressing. We just need to hope that they're right about the chylothorax and that the antibiotics they're giving him will knock out whatever it is now that has him against the ropes. Otherwise, Will's to-do list today is short once again: breathe and pee. The doctors will take care of the rest.
The strangest thing is Will's weight. We were here until 2:30 last night, so we were able to see many of the things that normally transpire while we're home asleep. We've helped to weigh him before, but this was strange. While I lifted him off the bed, his nurse gathered up all of the things attached to him and then zeroed out the bed (they do this, then set him back down so that he's the only new element to be weighed. It's the only way to weigh a kid with medicine pumps, chest tubes, IVs and other things in his bed with him at all times). Each time I would set him down, his weight would register somewhere between 2100 and 2300 grams. That's up from 1871 yesterday. They settled on 2300 some odd grams, which means according to their calculations he put on about 400 grams yesterday. Remember, a pound is 453 grams and he dipped below that in his first week briefly, so you can see it's quite an amazing weight gain. Though he looks miserably puffy (his skin is stretched so tight in places that it is shiny), he doesn't look that puffy. Regardless, he really needs to get that fluid off. It's no wonder he's having trouble getting his lungs to inflate when he has that much fluid around them. So, they're limiting his intake today, continuing to give him diuretics and hoping that he'll start peeing good again.
Sound familiar? Save for the change in his chylothorax, this probably sounds exactly like what I wrote last Monday. I'd check myself, but it's too depressing. We just need to hope that they're right about the chylothorax and that the antibiotics they're giving him will knock out whatever it is now that has him against the ropes. Otherwise, Will's to-do list today is short once again: breathe and pee. The doctors will take care of the rest.
posted by John Kenyon at 11:58 AM
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