Probably one of the worst day reports I’m going to do today.
We’ve had a lot of obstacles along the way.
The biggest and scariest was death.
We passed it.
The second is the lifelong after-effects.
Well, today the pneumologist confirmed that Gabriel has bronchiolitis obliterans.
Bronchiolitis obliterans is a rare and serious chronic lung disease affecting the small bronchi (bronchioles). It causes inflammation and progressive obstruction by scar tissue. This impedes air circulation and makes breathing difficult. The disease is irreversible and incurable: damaged bronchioles never heal. Treatments are aimed solely at slowing progression and relieving symptoms.
The positives (because you always have to find some to have the strength to move forward)
We already more or less knew and had more or less prepared ourselves for this eventuality (hence my extreme anxiety this past week).
According to the pulmonologist, his case is between mild and moderate. The goal is to get him back to mild.
It’s possible that he’ll remain oxygen-dependent for a while, which is common in this type of case. But that doesn’t mean he has to stay in hospital for life. He can be discharged with a home oxygen device, with follow-up consultation.
If they can do without the high-flow cannula, he can avoid a tracheotomy.
Among the cases known to the Fortaleza-based pulmonologist, all have managed to do without oxygen over the long term.
In a few years’ time, the virtual world will be better than the real one, and he’ll be able to enjoy himself even if he can’t run (I’m a geek).
More
The aim was to get him out of hospital as quickly as possible without having to perform a tracheotomy.
Gabriel needs to get off the high-flow cannula and switch to a conventional oxygen cannula.
Tomorrow, he’ll have an ultrasound to check for pulmonary hypertension. If so, he’ll be given Sildenafil (the same molecule as Viagra) to help him.
In addition to treatment, he will be monitored by physiotherapists and speech therapists to help him learn to eat again.
In the long term, he may have an oxygen tank with him.
He’ll be sensitive to viruses, and we’ll need to take precautions (masks at home, gowns…): a kind of Covid confinement for a long period.
And according to the pulmonologist, he should be able to do without oxygen (as is the case with his current patients), because he’s a baby and his body (his lungs in particular) will adapt to this weakness.
Later, he should be able to travel and have a “normal” life.
How do we react?
Great, we’re so happy!
Just kidding!
It’s complicated, we feel guilty, I personally feel hate. But we have no choice.
We have 2 solutions
- Being fat, whiny weaklings and crawling on the floor under medication complaining all day long.
- Accept, fight, defend ourselves, make Gabriel’s life the best it can be
The question is quickly answered!
It’s going to be tough, but we’re going to give it our best shot and do our best.
Message for my son
One day, you’ll read this message.
And when that day comes, you won’t find it hard to breathe.
You’ll lead a normal life.
And you’ll probably wonder what all the fuss was about.
But I want to tell you this:
I am deeply sorry that I chose to have you born here, and that I brought you to this hospital.
Most parents make this choice and have no problems.
But you weren’t so lucky.
I couldn’t have foreseen it.
I really thought I was doing the best I could.
I really thought we were going to have a good life.
We had everything to succeed.
But nature can be cruel, and life is full of trials.
Some are harder than others.
And the one we’re going through today is by far the most difficult.
But with your mom, we’re strong.
We’re resourceful.
We complement each other.
And we’re going to do EVERYTHING to give you the best possible life.
We’re going to fight every day, with our heads held high and our chests puffed out.
We’re going to defend ourselves against the mistakes we’ve made.
And they will pay.
And you will succeed.
You will win!
Your mother will rely on her faith.
Me, on my spirituality.
And, above all, we’ll be using the best scientific tools at our disposal.
My son, on May 12, 2025 I promised you that I would take you to the Champs-Élysées.
That you would run ahead of us, free and happy.
I renew this promise to you, and we will keep it.
I love you more than anything.
Your daddy.
