We went to the hospital twice today. The first time, he was stable on the hi-fi vent, and his numbers were starting to come back down a bit. It was an obvious setback from the normal vent, and they're still not sure why his CO2 was out of control earlier, but he was stable and coming down on everything. He was also very awake and the most alert we've ever seen him (for about ten minutes, until they sedated him). The nurses have been telling us how alert and responsive he is, but we never seem to be there at the right time. It was great to see him looking around, though it's obviously hard to watch him lay there, frustrated by the tube in his throat and his inability to move much. I'll post pictures from this visit tomorrow, perhaps with a video as well.
The second time we stopped by, after dinner, he was about the same. Still on the hi-fi, still on pretty high values, but they had brought his oxygen percentage down a bit since earlier in the day. While we were there, he got a bit cranky for no apparent reason. He gets touched off by some small things, like a wet diaper, and it sets him off so much that he throws off all his numbers. This was a particularly bad one, as he started to "desat," their abbreviated term for desaturating...dropping his blood oxygen saturation. I tried to calm him down, which worked temporarily, but then he went even more nutso. He flailed his arms and legs, tried to cry (creating lots of bubbles but no sound), and turned all red. His CO2 spiked, alarms started going off all over the place, and they quickly turned up his oxygen and gave him some morphine and paralytic. They wouldn't even tell us the results of the blood gas they got during this episode (it was BAD).
After he stabilized (passed out from the drugs), his CO2 started going back down and his saturation started going back up. We had a talk with the doctor, and she suggested slowing down the pace of his weaning. The strategy from the Doctor of the Day is to pause everything for a couple of days. During this time they'll keep him pretty sedated, keep him on the hi-fi vent, and try to get his numbers really good and stable before starting to wean again. She suggested that he's never had the opportunity to become comfortable before challenging him to improve yet again. With him being so fragile and getting upset so easily, this will inevitably provoke setbacks. We'll see if this strategy survives tomorrow's Doctor of the Day or gets changed yet again....but after seeing him get so upset, I think I'd welcome the sedation so that he doesn't have to go through that again.
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