Hey Son,
Two days ago, I told you I was focused on work, especially on a website I had to deliver today. Well, it’s done; it’s been online since 4 AM this morning, and the client is receiving orders one after another.
You’ll see, in life, it’s always satisfying to build something and see it work. It’s even better when it brings value to people.
I’m sure that with everything you’ve been through, you’ll positively impact the world.
Yesterday was quite stable.
What I mainly remember is the visit from the NIV specialist last night.
For your guardian angels who are reading this (and those who will find us via search), I’m going to explain what it is and what it’s for.
NIV stands for Non-Invasive Ventilation.
When you were in the hospital, you were intubated. The machine sent air into your lungs to keep them working.
(Until they stopped working altogether, and you had to be connected to an ECMO, a kind of artificial lung.)
Fortunately, today you are much better and no longer need these machines.
However, you have small tubes in your lungs that are damaged and will never work again.
These tubes bear a scar from what you’ve been through, and this scar blocks the passage of air.
The good thing is that you are still a baby, and your lungs are not fully developed.
Specialists say that until the age of two, your lungs will develop further, then more slowly until eight years old.
Since part of your lungs doesn’t work, you have to compensate by breathing faster. We help you by giving you oxygen. That’s the baseline. But there’s also NIV.
We discovered NIV thanks to a respiratory physiotherapist recommended by a pulmonologist we had contacted outside the hospital.
Then we spoke about this with one of the hospital’s respiratory physiotherapists, who told us it was a VIP treatment and that, for insurance, it wasn’t good value for money, and that we absolutely shouldn’t mention she had told us.
(It reminds me of the atmosphere of terror we lived every day in that hell.)
So, with your mom, we fought again and again (complaints, contacts, medical reports…), and we finally got the right NIV machine: Philips Trilogy Evo.
The goal of this machine, and I’m simplifying, is to send a certain pressure into the lungs to keep the small tubes open (bronchi, bronchioles, etc.).
Those that are completely fibrotic will never open again, but the new ones that are forming feel this pressure.
And that’s where the magic of nature comes in. The more you use NIV, the more your body understands that it needs to keep these new tubes open and develop your lung.
Your rib cage will grow, and you will gain respiratory capacity.
In comparison, yesterday she explained to us that some parents are not informed about this type of care, and their children end up with atrophied lungs in underdeveloped rib cages.
(Son: knowledge is life)
Our goal is therefore for you to do as much NIV as possible in parallel with respiratory physiotherapy.
Problem:
Like most babies, you don’t tolerate it and you cry.
We have to wait until you’re asleep to put it on you.
There is a softer mask: the Respireo Soft Baby.
It makes things easier because it’s softer.
It adapts better to the fact that you have a lot of tubes in your nose. This reduces air leaks that disturb the machine.
Before, you had another one that looks like a giraffe; it’s not bad, but less suitable for babies your age.
For now, we place the mask on your nose while you sleep because you don’t yet tolerate the gray fasteners. But with time, you’ll be able to wear it on your own, and you’ll have it every time you sleep.
Some people are on NIV twenty-four hours a day.
In theory, you won’t need it. The goal is really to give you this positive pressure in your lungs when you sleep.
Then there’s the question of settings.
At the hospital, they didn’t know how to use this machine.
Which is partly logical because you have to fight to get it. So they’re not really used to using it (except maybe in the ICU).
By the way, they were also using adult tubes…
So we called upon an external respiratory physiotherapist to configure it correctly.
And last night, this person came and spent two hours with us to explain everything.
It’s actually very interesting.
It’s a mix of biomechanics, calculations, and observations.
For example, with your mom, we had noticed that your breathing rhythm didn’t always match the one the machine imposed.
It turned out that the machine was too fast for you.
This might explain why you had trouble sleeping and why you had so much gas. More to follow!
The lady adjusted everything, and we’ll see how you progress.
You know, son, every day we learn. And I’m very happy to be able to share it, because I hope it can help other little warriors like you.
On this note, I am continuing to think about creating a site dedicated to bronchiolitis obliterans. I joined a community of parents in Madrid, which led me to an international Facebook group.
I’m doing my research and still thinking about how I’m going to build this site. I want it to be useful to everyone.
That’s all for the NIV.
For those using this article, remember that I am not a healthcare professional; please always check with your doctor to see if it’s suitable for your case.
Tonight you were supposed to go for an X-ray at the hospital to check your probe, but it’s been postponed.
I love you, my little potato.
Dad
