![\"Lung\"](\"https:\/\/hopeforgabriel.com\/wp-content\/uploads\/2026\/03\/1-s2.0-s0515370020305504-gr1.jpg\")
<\/figure>\n\nIn your case, the bronchioles are partially blocked by scar tissue.<\/p>\n\n
That’s bronchiolitis obliterans.<\/p>\n\n
Imagine you have to inflate a balloon with a nearly blocked straw.<\/p>\n\n
To do it, you have to blow much harder for the air to pass through the straw and inflate a half-stuck balloon.<\/p>\n\n
That’s exactly what you do with every breath.<\/p>\n\n
If on top of that new areas are reopening and demanding air, the balloon gets bigger. But the straw stays the same. So the effort increases. <\/p>\n\n
Your saturation is improving and your retractions are intensifying at the same time.<\/p>\n\n
With time, care, the development of your lungs, and if you don’t encounter any viruses, it should improve. That’s our goal. <\/p>\n\n
The heart in all this<\/h3>\n\n
When the body works so hard to breathe, the heart works harder too.<\/p>\n\n
And when it lasts, what’s called pulmonary hypertension can develop.<\/p>\n\n
It’s common in children with your condition.<\/p>\n\n
Your great-aunt Annie, Grandma Michelle’s sister and my godmother, had a heart-lung transplant because of primary pulmonary hypertension when your dad was born.<\/p>\n\n
I don’t want you to follow that same path.<\/p>\n\n
I don’t like making this connection, but it’s always hard for me not to think about it.<\/p>\n\n
So soon, you’ll have another cardiac ultrasound to check that everything is okay on that front.<\/p>\n\n
The last two times, you had cried so much that it was impossible to see anything.<\/p>\n\n
We hope this time will be the right one.<\/p>\n\n
The specialists sent by God<\/h3>\n\n
We met several specialists in recent days.<\/p>\n\n
Including one who claims to have been “sent by God” and who supposedly knows your illness “better than anyone else.”<\/p>\n\n
Normally, this kind of talk makes me raise an eyebrow. And head for the exit. <\/p>\n\n
But in our case, madness and genius sometimes have the same face.<\/p>\n\n
Did you know? The first doctor to recommend washing hands before delivering babies spent years being treated like a madman. <\/p>\n\n
So we listen.<\/p>\n\n
We take what deserves to be taken.<\/p>\n\n
We leave the rest.<\/p>\n\n
She told us about an “off-label” treatment.<\/p>\n\n
A medication used outside its official indication.<\/p>\n\n
The idea: limit your vulnerability to viruses.<\/p>\n\n
With your condition, viruses are enemy number one.<\/p>\n\n
This medication is called dupilumab. Your Uncle Tiago uses it for other lung problems. <\/p>\n\n
It has already been tried in a child with the same condition as you, ten years older, and it seems to be helping.<\/p>\n\n
She also mentioned cannabidiol to relax you.<\/p>\n\n
But digging deeper, I think it’s not just for that.<\/p>\n\n
I discovered that some studies on lung inflammation (in animals) show fairly positive results.<\/p>\n\n
But all this remains to be proven in humans.<\/p>\n\n
With a rare disease, you have to stay open and analyze.<\/p>\n\n
For now, we’re taking notes.<\/p>\n\n
And we’re moving forward.<\/p>\n\n
The decision to make<\/h3>\n\n
It’s going to be a month soon since the tile exploded in the apartment and we had to notify the insurance that we had to leave.<\/p>\n\n
They had initially responded that they didn’t cover the area where we wanted to go.<\/p>\n\n
We still had to move because we didn\u2019t really have a choice.<\/p>\n\n
Your mom managed to get oxygen and other items through the public service.<\/p>\n\n
And for the rest, we brought the equipment provided by the insurance.<\/p>\n\n
This week, the public service brought other things we weren’t expecting.<\/p>\n\n
I shed a tear.<\/p>\n\n
It feels good to have help when you’ve been struggling for so long.<\/p>\n\n
Now, we have to decide whether to go back to the city or not.<\/p>\n\n
It’s an important decision.<\/p>\n\n
Otherwise, we risk losing what we had managed to get by fighting when we left the hospital.<\/p>\n\n
What scares us most is having to return the Philips Trilogy Evo NIV.<\/p>\n\n
We’re looking for solutions.<\/p>\n\n
Everything takes time…<\/p>\n\n
One day I’ll tell everything publicly, but I can’t right now. <\/p>\n\n
I think there’s enough to bring some people down…<\/p>\n\n
Food, always<\/h3>\n\n
Last week, you had gained weight: 8.2 kg<\/p>\n\n
This week, you lost some: 8.1 kg<\/p>\n\n
We know it will be like this for a while longer.<\/p>\n\n
It takes a lot of patience. But we’re already very happy to have passed 8 kg! <\/p>\n\n
This morning, I managed to give you everything. But it was an hour and a half of struggle. <\/p>\n\n
We’re aiming for maximum calories for minimum volume.<\/p>\n\n
Coconut, avocado, oils are part of your meals. Always accompanied by powdered milk so you have everything you need. <\/p>\n\n
Your mom counts absolutely every calorie and racks her brain trying to vary meals while still sticking to that calorie target.<\/p>\n\n
Your crazy parents (nuts)<\/h3>\n\n
People often ask me how we’re doing?<\/p>\n\n
Is it really important? I don’t think so. The most important thing is you. <\/p>\n\n
Your mom spends a lot of time looking for information, exchanging with other parents.<\/p>\n\n
It’s thanks to her that you’re making so much progress.<\/p>\n\n
But we also hear difficult stories.<\/p>\n\n
Children who were doing better, then a virus, and everything gets worse.<\/p>\n\n
It creates constant stress.<\/p>\n\n
On top of the lack of sleep and the financial pressure.<\/p>\n\n
And it’s heavy to carry at home.<\/p>\n\n
Positive stories are rare.<\/p>\n\n
Maybe because those who get through it don’t talk about it anymore.<\/p>\n\n
I like to believe that’s it.<\/p>\n\n