I went to visit Seth both today and tonight. I went during the day primarily to talk to the doctor with the least bedside manner but the most candor. It's kind of like talking to a book...that talks back. He finally gave us some concrete measures that I thought were interesting.
• It's not time to pull the plug until the following criteria are met--from a medically ethical standpoint:
- There is multiple organ failure
- There is brain damage that will lead to a vegetative state
To get to the brain damage level, saturation in the 60s won't necessarily do it. Maybe. But a fetus that is growing has oxygen levels in the 60s. So there's nothing proven that says that's not enough to cause permanent, irreparable damage. If it drops to the 40s, then that's a problem and that will cause that sort of brain damage.
When I went in today he was in the 60s. He'd dropped from our last visit. Also, they've got him on every med possible, and tried everything as far as the oxygen support goes. And now they are merely experimenting. Trying things they wouldn't normally do, because there's nothing else proven left to try. But even those things haven't resulted in increased levels. He still continues to decline.
Tonight his levels were up! In the low eighties and high seventies. And he looked better. So if nothing else, it made us feel better. But it was actually a good sign too, at least for now. He's off the oscillator which just felt so traumatic. So who knows, he may turn around.
I can't tell you how much I hate this up and down when it's this extreme. Its tortuous.
Well, its nice to have some concrete data. Just as a reference point we often have kids that come to us for heart surgery with sats in the 70-80's chronically...once they have their heart surgery it comes up but they may have low sats for MONTHS before their surgery waiting til they are bigger. Another thought...how are they measuring his saturations? Externally through a finger or other body part monitor? Just wondering because if they are having so much trouble with his IV's because his veins are poor maybe the saturations aren't as accurate as they could be? When people have poor circulation on our floor we have a hard time getting accurate saturations. Thanks for keeping us all updated! We love you guys!
ReplyDeleteWe always prefer the doctors who are straightforward too. It's hard, but kind of like ripping off a bandaid. Thank you for keeping your blog up to date. I check it regularly to see how things are going.
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