Hello, son,
A full update on how things are progressing.
Lungs
Yesterday, you had a lung scan.
We went to Acaraú, to a new private clinic—top-notch!
Brand-new equipment, hardly anyone there, and skilled staff. We just had to insist that some people wear a mask, because we don’t mess around with that. But apart from that, everything went really well.
They lightly sedated you, you were a bit groggy, and we got the images.
Now we’re waiting for the doctor’s official report.
We’re starting to understand a few things by looking at the images, but we’re not professionals. So we’re waiting for a real diagnosis…
What’s certain is that we can see the after-effects. Your lungs were affected.
But clinically, you seem to be compensating.
Everything we’ve been putting in place for months is working. Physio twice a day, the exercises, the machines, the medication, all that discipline… it seems to be paying off.
Glory to action!
You’re breathing without oxygen more and more often, sometimes all day.
The goal now is simple. Keep going. Protect.
Your lungs can keep developing until around age 8.
So we’re playing the long game.
And if we have to live shut in, control every entry, avoid every virus, then we’ll do it. Without hesitation.
We’ll adapt. We’ll create our own world.
Food
This is more complicated.
It’s hard. And I think we share some responsibility.
We delegated that part, and we lost control.
Today, it’s actually what worries me the most.
For several days now, I haven’t been able to get you to eat in the morning.
It was the only meal I gave you; the rest is the nanny. And your mom when the nanny isn’t there.
Before, it was difficult but possible. Now it’s blocked. You refuse, you keep your mouth shut.
The nanny manages to get you to eat. She really is doing her best.
But there’s no pleasure anymore. You eat distractedly, looking elsewhere. We have to make noise everywhere to get you to open your mouth and slip the spoon in. Despite all the medications you have to swallow for reflux (esio, domperidone, sucrafilm, famox, luftal).
It’s not natural anymore. And the situation is getting worse.
It really bothers me.
Because eating should stay a pleasure, not a fight.
Otherwise, you risk developing a complicated relationship with food.
And above all, you need it. To grow, recover, and help your lungs develop.
Today, I decided to take back control.
I’m going to test, understand, adjust.
And if we can’t manage it, we have a plan B: the G-tube.
We need to aim for the long term and face this problem that scares us.
We don’t want it to come to that. But we won’t let the situation get worse.
We’re also planning a return to Fortaleza to examine your esophagus with a camera.
Donations
Like every month, I did the check-in.
And honestly, thank you. Thank you to everyone who supports us.
Because the costs are still very high.
Last month, over 30,000 reais (around 5,000 euros).
We thought that once we were back home, it would ease up.
In reality, we had to recreate everything.
Buy equipment, see new specialists, do tests, anticipate the end of certain support (because it’s “not in the area”).
But we’re not just taking it.
With your mom, we take action.
We’re looking for solutions.
And things are starting to move.
The local government is helping us a lot.
And to reduce costs, we have two serious leads, one in France, one in Brazil. But the paperwork is slow…
If it gets unblocked, we’ll be able to breathe financially too.
And maybe even free ourselves from the big bad one…
And then we’ll change our stance. Because “paizinho” doesn’t forget 😉
The rest
You know, son, I was already saying it even before you arrived,
life is constant chaos.
You’re already lucky if you’re born in the right place…
And then there are so many variables, so many unexpected things…
It’s not easy every day.
So you have 2 choices.
Lie down and take it.
Or move forward, take action, despite the obstacles.
I can’t stand hearing anymore that you came to teach us something, or that everything would be written in advance.
Let them go say that to the parents who watched their child die in intensive care. They’ll see what it’s worth.
Action is the only thing that lets you move forward.
The rest is support for action.
But no one is going to teach you that.
You already know it. You live it. You show it to us every day.
We’re proud of you.
Proud of us too, in a way. Because we’re holding on.
And above all, we’re deeply happy to see you breathing without those damn tubes.
Kisses, my little potato.
I love you.
Dad.
