Hello, son,
It’s been about 10 days now since we came back home.
The first days at home
At first, you had a bit of a fever.
Then your breathing was a bit strange, with some secretions.
I don’t know if it was us being stressed that something might happen to you, or if it was simply you, with what you already have regularly. Let’s say it’s probably linked to your condition, and that it stays within something “normal” for you.
What I can say today is that your breathing and your lungs are overall stable.
Like in Fortaleza, you wake up pretty well in the morning, then as the day goes on you get tired, with more noticeable retractions. That’s something we already knew.
As for your oxygen saturation, you’re pretty stable too. You stay above 92 all day, sometimes with a bit of oxygen, between 0 and 0.5, and sometimes up to 1 when we do your physio sessions with masks like Enbout or TR3. You cry a lot then, but overall there’s nothing new. And that reassures us so much!
The house, on its side, seems healthy.
We air it out all day. The AC runs too. We installed Stérilair units pretty much everywhere, as well as dehumidifiers. And above all, the work done with your uncle Raphaël helps a lot. The wall in your bedroom stays dry, and I think that changes a lot. Thanks again to him.
I spend time with you in the morning and in the evening, and it’s always a joy to see you wake up. You kick your feet in your bed to tell me, “hey dad, I’m awake.” Then, when I show up with my guy face that gets up every day at 2 a.m., you laugh. And then we play peekaboo. And you laugh again.
Despite everything you’ve been through, you’re really a calm child, and we’re very lucky.
You keep trying to crawl. It’s not quite there yet. You also stand up by holding onto the sides of your playpen when you’re sitting, then you fall back onto your little bottom.
You’re also trying to say things. We’re listening out for “dad” or “mamãe.”
Socially, nothing new. We don’t go out much to avoid any risk of catching a virus.
In the end, we’re allowing ourselves a 30-day trial at home to see what we’ll do next.
Food and weight
When it comes to food, we have good news.
You’ve gained weight. You’ve gone over 8 kilos!
But it’s still a real challenge to get you to eat.
You refuse any food if it isn’t mixed with water. And the water has to be clear. You look at the spoon, and if it isn’t clear enough, you refuse.
So we have to be clever. We have to catch your attention with birds or something else, and when you open your mouth, take the opportunity to feed you.
Your mom makes super high-calorie meals to reach 1,200 calories a day. And your nanny Fabi often saves us.
It’s complicated, but we know it’s a long process, with everything you’ve been through.
We’re staying patient. And above all, we hope you won’t need the gastrostomy that’s been hanging over us for a while.
For now, we’re holding on. And that’s already a victory.
The cats coming back?
We’ve also been asked about the cats.
For now, we’d rather wait.
There are allergy risks, and we don’t want to add that on top of everything else.
And then, if we ever had to leave again in an emergency, it would be one more thing to manage.
So we’re keeping it simple, step by step.
Healthcare professionals
On the healthcare side, you’re well supported.
You have a “general” physio with lots of experience, especially in hospital, who comes five times a week.
And two respiratory physios who alternate, also five times a week.
It’s going very well.
Your mom also does an enormous amount.
She learned techniques like TR3 and AFE.
And we also have professionals online like we did in Fortaleza.
Saint Joseph in Barrinha
Yesterday was Saint Joseph’s Day in Barrinha.
It’s a religious celebration around Saint Joseph.
Here in Ceará, they say that if it rains that day, it’s a sign of good harvests. And in a fishing village like ours, that means there will be fish.
(If I’m not mistaken, because my religious knowledge is still limited.)
For the occasion, your aunt Fran, with people from the church, organized a little stop in front of you during their parade.
So we drove to the end of the street, then they came by and stopped in front of us.
They gave you a blessing. For your full recovery, for your health!
It was very emotional.
Because beyond religion, it was above all a human moment.
A moment when we felt supported.
And above all, a moment that marked something important:
We came back home. To our village. And that’s a victory!
And all these people prayed for you when you were in the ICU so you could come back here.
And together, we did it!
THANK YOU!!!
BOCommunity.org – Site for bronchiolitis obliterans
I’m making a lot of progress on this site.
I added a space for professionals. I’m working on SEO. I’m adding resources.
My goal is clear.
I want this site to become the global reference for bronchiolitis obliterans.
A place where families, patients, doctors, and researchers can come together.
Share. Understand. And above all, find solutions together.
I’m putting a lot of time into it. Because I know it’s important.
Link to visit it: https://bocommunity.org
The Breath Passes
Your grandpa Robert is going to ride nearly 1,000 kilometers by bike in the Alps this summer to support the association.
And he’s working a lot on this project.
We’re looking for partners and we’re starting to get some:
- Carrefour Market in Belleville
- Probably Crédit Agricole
- We also have Christine who’s going to organize a farewell paella.
- The Belleville cycling club will support the launch.
And we’re still looking for more people:
- Partners who want to join the adventure and take part, in any way. Maybe you?
- Places to stay along the route. I’m putting the dates below:
8 août 2026 — Cerdon
9 août 2026 — St-Julien-en-Genevois
10 août 2026 — Thonon-les-Bains
11 août 2026 — Cluses-Scionzier
12 août 2026 — La Clusaz
13 août 2026 — Beaufort-sur-Doron
14 août 2026 — Bourg-Saint-Maurice
15 août 2026 — Lanslebourg-Val-Cenis
16 août 2026 — Valloire
17 août 2026 — Valloire
18 août 2026 — Briançon
19 août 2026 — Guillestre
20 août 2026 — Barcelonnette
21 août 2026 — Péone-Valberg
22 août 2026 — Saint-Martin-de-Vésubie
23 août 2026 — Saint-Martin-de-Vésubie
24 août 2026 — Sospel
25 août 2026 — NiceAll the info is on the website:
https://www.lescolsdusouffle.com
That’s it, son.
We’re moving forward. Slowly. But we’re moving forward all together!
Big kisses to you, my little potato.
I love you
Dad
