NIV (non-invasive ventilation): our experience with our son

I wanted to share an important topic: NIV, non-invasive ventilation.

When our son was diagnosed, we were in a hospital where, clearly, costs came before patients' health. Fortunately, while talking with a very competent physiotherapist, she advised us to look into NIV.

So we started to get informed.

Since we live in Brazil, we had access to quite a few local feedbacks. And in parallel, being French, I also got opinions from professionals in Europe.

What's interesting is that NIV seems to be much more used in Brazil than in France. In France, some specialists told me that its effectiveness was not clearly proven in certain cases.

So at first, I was rather skeptical.

But on a daily basis, our perception is very clear.

When our son uses NIV, he is less tired. Especially in the evening.

At first, we only used it at night. But it's complicated, because he barely accepts the mask. He cries, so we have to put it on him while he sleeps, manually.

For some time now, we've also been using it during naps, during the day. Always the same way.

And there, we really see a difference. Even though he no longer needs oxygen today, on days when he takes a nap with NIV in the morning and afternoon, he is clearly in better shape in the evening.

It's not scientific proof. But it's our reality.

For information, we used the Philips Trilogy Evo. And we've just invested in a BiPAP machine from the Lumiar Saúde brand, more accessible here in Brazil and which avoids import taxes.

We've just ordered it, so I can't give feedback yet, but I will later.

I'm curious to hear your feedback.

Does anyone here use NIV? In what contexts? And with what results?