Hello, son,
Yesterday started with quite a bit of stress.
Your breathing was fast.
Your tube was blocked.
Then, without any specific intervention, your breathing returned to something more normal for you.
It’s been three days since you’ve had afternoon respiratory physiotherapy.
The physiotherapist is currently facing personal difficulties. We wondered about the possible impact of this interruption.
Around 8:30 AM, I had to go pledge allegiance to the Brazilian flag to finalize obtaining my Brazilian nationality.
Military stuff isn’t really Dad’s thing.
But it’s interesting to observe. Everything is organized, framed, structured.
And it’s always interesting to learn about the culture of the country you live in.
On the Brazilian flag, it says “Ordem e Progresso”.
Order and Progress in French.
And that reminded me how much a slogan, whether for a country or a company, isn’t always representative of reality.
Our experience in this hospital this year made us feel that these two words were absent from our daily reality.
But thinking about it, it’s the same everywhere.
When I think of France and its motto “Liberté, Égalité, Fraternité”, I’m not sure these values are truly embodied today.
Why am I telling you all this, son.
Because later, you’ll need to have clear, strong values that you’ll proudly uphold.
Values and goals that you’ll follow like a North Star.
Without values and without a goal, you’ll go nowhere.
Or worse, you’ll go where others want you to go.
Freedom is a choice.
Let’s get back to our day.
When I got home, your tube was still blocked.
Following specialists’ advice, we tried everything.
Plain water.
Sparkling water.
The tube’s guide wire.
They even suggested Coca-Cola. But we avoided that.
In the end, the pediatrician told us that the tube was too old anyway.
So we talked with all the specialists.
And thank them for the time they dedicate to us.
And we made an important decision.
To remove the tube without putting in a new one.
You know how to eat with a spoon and you like it!
The real problem is liquids and medications.
Water makes you cough, and we must avoid any risk of bronchoaspiration.
The speech therapists help us enormously with this.
And if we don’t succeed (which won’t happen), we might have to go back to the tube.
But we’re going to do everything to avoid it.
We called a trusted person to help us remove it.
And on December 19 at 5:19 PM, we removed your gastric tube!
You had been wearing a tube since April 29.
That’s approximately 234 days with a tube out of 257 days of life.
About 91% of your life with a tube!
Son, a new life is therefore beginning for you.
And I deeply believe it.
Everything will get better.
The next step will be oxygen!
Once the tube and dressings were removed, we saw that your skin was quite burned on the right side.
We’re going to take care of you so you can get back beautiful baby skin!
We also changed your oxygen catheter.
And we even indulged in the luxury of taking it off for a moment.
Just to see you without anything!
That hadn’t happened in seven months.
Without a tube.
Without tubes.
What joy!
It’s strange, because you look different without all this equipment.
You no longer have a baby face, but a little boy’s face.
You are so beautiful!
Your mom and I are so proud of you!
You are so strong!
Keep it up.
We love you
Dad
