Hello, son,
As you may have noticed, I’m writing less.
Firstly, because your progress is stabilizing.
Secondly, because I’d generally be writing the same things every day, and honestly, I’m short on time. I’m trying to get back to my work and move forward.
I’ve also scaled back on Instagram. That’s not the priority right now.
But today, I still have a lot to tell you.
You don’t want to eat anymore
For the past few days, feeding you has become a real ninja operation.
You take 3 spoonfuls, then you cry.
We wait 30 minutes, then we start again.
Honestly, I think you’re starting to understand the idea of a whim. And it’s funny.
Even though it’s clear your teeth aren’t helping, I don’t think that’s the main reason.
We change the menu, the location, the position. We reinvent ourselves, and little by little, we get there.
The problem is, you need to eat more than other children. Because of your illness, your energy cost is higher.
So we have to monitor your weight very closely and see how it progresses (for now, it’s no longer progressing…).
Despite everything, I remain confident.
Reflux and company
I find that your reflux has decreased. However, we remain very vigilant.
With a gastroenterologist’s advice, we’re also trying to gradually reduce the medication over 2 months.
I think patience is essential.
Oxygen
We’re continuing the reduction procedure, removing oxygen in the morning and afternoon.
You’re tolerating it quite well, even though your retractions persist. We know they’ll still be there for a few months/years.
During these times without oxygen, your saturation sometimes drops below 90, but it’s quite rare.
We’re seeing a gentle improvement.
I continue to believe, and I love seeing you without your catheter in your nose.
It’s as if we’re erasing the past, as if none of it ever happened.
The hospital from hell is still making headlines.
I saw several posts on Instagram about the hospital where you were.
Parents are still having problems.
People are saying, ‘they killed my child’.
The regional Ministry of Health is launching a new investigation.
It’s sad.
Other influencers are speaking out against the practices of the health insurance that manages his case.
Patients are left without care, even after court rulings.
The insurance company lost millions.
The CEO was ousted.
The truth is revealed!
Cardiac Echo, Episode 2
We had to check if you have pulmonary hypertension. The pediatrician wanted precise information.
The first time, the doctor had clearly done a poor job. So we had to go back.
This time, the doctor was excellent. But you, Gabriel, cried like never before. He couldn’t get all the necessary measurements.
He thinks you don’t have hypertension, but he can’t say for 100% certain.
He also explained that your lungs and air trapping greatly hinder visibility.
As a result, medically speaking, we went there for nothing.
But we saw friends from the ICU again. Another warrior child, who stayed in intensive care for months.
When I meet people who have been through this, I feel like I’m reuniting with brothers in arms.
People who know exactly where we’ve come from and how precious life is.
This kind of emotion cannot be understood by those who haven’t experienced it.
I can’t even imagine what soldiers feel when they return from war.
Brain MRI
So, we went back this week. And this time, we managed to do it!
I just received the results, and they show no abnormalities!!!
Even though we suspected it, given your incredible development since leaving the hospital, the doubt was always there.
With the days your saturation dropped below 85 and the ECMO, we knew there was a risk.
And honestly, I cried when I saw the result.
I’m so happy and proud of you!
Community Website Project on Bronchiolitis Obliterans
As I mentioned, I started a community website project with my community of website creators.
The idea is to highlight your rare illness and, at the same time, to train myself in new ways of ‘coding’ websites with AI (vibecoding).
My idea is to move forward on all fronts, without wasting time, and to share this with the community. As Steve Jobs said in his Stanford speech : “connecting the dots”.
I think that when you read this article, all of this will seem totally obsolete to you, haha.
But at least you’ll have memories of your old dad and see him working with passion.
For those interested, here is the playlist, with about one video per week:
My video from 2 days ago has already surpassed 800 views, I’m happy!
Normal Life
Your mom continues to work on coming home and organizing things.
There’s a lot to manage.
Insurance, professionals, care, humidity in the house, emergency treatments.
Living four hours away from a big city requires meticulous planning.
We will only go home if everything is structured and secure for your health.
She has also taken over all the administrative part.
Everything is slowly but surely getting organized.
It’s funny, because a normal life, for us today, is simply being able to live at home.
We know we’ll have to continue wearing masks, be vigilant about who enters our home, have oxygen, machines…
But I think we’ve gotten used to it.
We haven’t been out for months, except for quick grocery runs when we don’t order them online.
And when we come home, it’s a shower and a change of clothes.
You know, son, in life, you get used to everything.
To the good things as well as the bad.
You have to be vigilant, because you can quickly get trapped in negativity and turn your life into hell without even realizing it.
In our case, life is not simple, but we hold onto hope for better days.
It’s important to set goals. Returning home is part of that.
Talking with other parents of children with BOPI, we see that the developments are very random.
Some do very well.
Others have to go through a transplant, and they also make it through.
The key factor is recurrences of severe respiratory viruses like a new bronchiolitis or an adenovirus in the first years of life.
That’s why we continue with a strict protocol.
The question remains: until when?
We know that today, there are very powerful vaccines to allow you to go out without fearing a simple flu.
Your uncle/godfather Tiago benefits from it.
Perhaps it’s a path to consider so you can have a normal life when you’re older?
There you go.
I think I’ve covered everything I wanted to share with you this time.
We’re continuing on this positive momentum.
And we’re keeping our goal of a normal life in 2026!
I love you, little potato!
Dad
