We had 3 good days at home. Ben was feeding well, gained weight, saw his pediatrician and everything was status quo. Last night he developed difficulty breathing and increased effort. Very frightening to watch your whole world struggling to breathe. Once we noted the change we drove in to MGH emergency. It's less than 10 mins from us and our pediatrician is MGH affiliated plus they can access all of Ben's records. I guess he couldn't go back to BWH NICU because once you're discharged that's it. So we're at MGH PICU (Pediatric intensive care unit) they gave him a Nebulizer breathing treatment which he responded well to. His oxygenation was perfectly fine on arrival and his Chest X-ray didn't show anything too concerning. They're ruling him out for flu and some respiratory viruses. They're also checking another ECHO to look at his heart/lungs from the pulmonary hypertension and having an Ear/Nose/Throat Doctor look at his airway.
The poor dude. It's the worst feeling in the world feeling so helpless. Last night was really scary. Ben was so brave. Luckily his room has a cot so I could sleep here. Matt went home to the dogs and came back. We are basically in survival mode which is try to eat/drink, pump milk for Ben, and be good historians for the doctors. Ironically Ben's PICU fellow is a kid I went to high school with. I haven't seen him since. Nicest guy in the world. He got "Class Gentleman" superlative. It was nice to see a familiar face. Hopefully we'll have answers later. Good news is Ben looks better. And hopefully this is a blip in the road and we can get him better enough to go home soon.