Today’s meeting with Sam’s doctor wasn’t that informative. Mostly because we’re still waiting on things….
We did ask about Sam on the ventilator, that isn’t it true the longer he’s on it, the harder it is for him to come off. Yes. But because his abdomen is so swollen, they don’t really want to make any changes.
Today his abdomen is fuller, he’s gained weight again (we don’t want him gaining weight right now), most of the distension is his liver. The doctor ordered an ultrasound with doppler to get a better look at his liver, looking for hypertension in the blood vessels. At this point, they don’t want to drain the extra fluid in his belly.
At one point my heart dropped. We asked where we stood with things: are we not doing anything because we want to see what will happen, see if things get better, or are we not doing anything because we CAN’T do anything, there’s nothing that can help him. He said that we definitely aren’t at that point, but if we got there, Sam would have to go another hospital that could operate on his liver, a hospital with a liver transplant program. Heart drop.
Quickly recovered though because we aren’t at that point. So I’m not going to think about it.
The doctor then got a phone call, stepped out, so we continued talking about our overall concerns with the social worker.
The doctor comes back with news….
I couldn’t help but laugh. That kid! We were talking to the doctor last week about when Sam could get back on CPAP, and he said they weren’t going to rush it with everything else going on. But if by some chance he self-extubated, they’d give him another trial. While the doctor was talking, Sam was watching, paying attention. Of course I know he can’t understand what’s being said, but his eyes were following and focused, his eyebrows raised. We joked then that he was going to do it and to make sure that we weren’t blamed.
Last night he kept pulling on the tube, clearly uncomfortable with it. Today he yanked hard enough on it to dislodge it out. So they put him back on CPAP to see how he’d do. If he goes great, then awesome. If he tires out, he’ll just go back on the vent.
Part of me is so proud of him. Part of me is excited that maybe I can finally hold him soon (oh please Sam, please make it a few days). Part of me is nervous that he’ll get tired, something will happen again.
In other news, Sebastien is now wearing newborn sized clothing. Some of his preemie outfits still feet, but the onesies he’s worn this week have all been NB.