Roller Coaster

Andrew had a great night last night, and then a not-so-great morning. After getting down to minimal settings and flirting with going back to the conventional ventilator, he sent his CO2 shooting upward and had to have his ventilator turned back up. He was on high oxygen, pressure, and amplitude during the morning, then started to come back down during the afternoon. They also restarted his feeds at 1cc per hour (he was at 21 on Wednesday). To make sure everything was going the right place, they got another belly x-ray and also put a diluted dye into his stomach tube. By seeing where the (bright blue) dye ended up, they were able to verify appropriate digestive movement. They'll start increasing the volume slowly, but probably won't go as high as they were earlier this week.

On the way out during shift change, we got the chance to talk to the head of the NICU. It's been over a week since we've talked to any doctors about his progress, and we were beginning to feel like we were on permanent pause. With two steps forward and two (or three) steps back, there was no real end in sight. After talking to the doctor we felt a bit better, though they're still going to take it slow and steady.

When they came up with this new idea of keeping him on his side to collapse his left lung, the idea was twofold. First, they wanted to see if collapsing that lung impeded his breathing or overall progress...if so, then he obviously needs the use of that lung. Second, they wanted to see if relieving the pressure on his right lung, even temporarily, would allow him to improve. Even though he's had setbacks after getting upset or being moved, he's demonstrated the ability to do better in the right conditions. If he hadn't shown those fleeting signs of improvement during the last week, we would have been having a much different (and more sad) conversation. Since he proved himself in both tests, they know that he's not a lost cause. Unfortunately, his overall circumstances also suggest that his survival is far from guaranteed, and that even a successful path will be a long, difficult one.....nine months and a year were both mentioned as possibilities, but it could be even longer.

At the moment, it looks like the likely next step for a permanent solution would be a lung resection, removing the underdeveloped upper lobe of the left lung so that it no longer impedes the heart or right lung. There are a lot of discussions to be had, doctors to be consulted, and questions to be asked before they would actually perform the surgery, but it seems like the removal may give his right lung a good shot at further development. For now, they want to see him continue as-is for a week or so, keeping the pressure off his right lung and allowing him to have a few good days in a row. Though they probably could wean him back to the conventional ventilator, the hi-fi makes it easier for him to recover from any temporary collapses of his good lung. As such, they'll probably keep him on it for a while.

The meeting was relatively brief, but we also discussed a few lung surgery details, the stomach valve surgery, short-term ventilator plans, and possible complications and setbacks. I won't bore you with the details, but I'll definitely keep posting with Andrew's progress, both with this strategy and toward a more permanent solution. Even with the continued possibility of a negative outcome, we feel better being informed and we really appreciated the doctor's update today. I hope the same is true of Andrew's loyal readers.