medical mumbo-jumbo

We had a pulmonology appointment today. Have I said how much I love her? Every time we see her she spends an hour with us, talking about everything under the sun with him.
It was a trach follow-up, but also I wanted to talk to her about how he still doesn't sleep at night. I've caught him desatting twice while sound asleep. Some people say he probably had a mucous plug, but he was not junky, and he never even stirs. It was just like before the trach. So here comes the medical jargon..
We talked a little about lung disease. I wanted her take on what causes lung disease. I had heard that being intubated and on the vent causes lung disease. Well she said that just being on the vent doesn't cause lung disease, its the pressure the vent is pushing. So if they are really sick and have a really high peep, thats causing more damage. And he's definitely had some extremely high pressure support on the vent. Looking back, there was a couple of times were they probably should have put him on the oscillator just to save lung tissue. There was twice were he was at a peep of 15, which is the highest they will do on the conventional vent. Extubation is usually around 5, and they consider 8 and 9 to be a lot of support. So 15 was basically trying to shove air into his lungs, not good.
Also she said the DS kids in general have smaller, weaker lungs. And of course refluxing and aspirating does a lot of damage. And then you have pulmonary hypertension, that does damage. So there are a lot of reasons why Jaxson's lungs in particular are toast! She said he probably will never be able to come off the high doses of diuretics he still requires, that his sick lungs sluff off a lot of fluid.
She does a lot of shaking her head when she meets with us. Not in a bad way, just amazed at how complicated he is. When looking at him, you have to think of everything before you make decisions. He has pleural effusions on both lungs. Its chylus fluid, which he has a history of having out of the blue. But chylus fluid is fatty fluid, and he is on an all fat diet for his seizures, so it makes the effusions worse, but we can't do anything about it because he needs the diet. How this kids lungs even work is beyond me!
She wants another sleep study, yipee! (Sense the sarcasm?)
She thinks he needs the vent at night. I knew that was the direction we were headed. But if it will help the kid sleep at night then bring it on. She thinks with his already sick lungs and severe hypotonia, that he just needs a little extra help when he sleeps. She's thinking c-pap settings on the vent will give him the extra push he needs to oxygenate well.
So we will have the sleep study with a full EEG because of his seizures and go from there.