I’m often asked for news by message.
It’s true that since we’ve been home, I’ve let go of my daily routine.
I originally launched this blog with the aim of informing people about the situation, to avoid having to repeat things and answer the question “How’s it going?”.
Over time, it has become a multi-faceted tool:
- Communicate with you, but also with doctors from all over the world (there’s a hidden medical section on the site).
- Bringing love to our son from the outside (the famous “sending love“).
- Talk about what you’re going through so that, in the future, you can free up all the articles and share them with other people who might need them.
- Free my mind and write down what we’re going through (a bit therapeutic).
- And also, I hadn’t thought about it at first, it’s very useful for going back over facts.
When we were in hospital, I felt that if I didn’t post one day, everything would go wrong.
For me, the exit was the beginning of another life, where I allowed myself to let go.
And then, it has to be said, we were thrown into the deep end, where time and sleep have become scarce resources.
So, how’s our champion doing?
Well, he’s still fighting.
It’s not easy every day.
For example, he’s been crying a lot for four days now, and we don’t really know why.
You’ll tell me that this is often the case with babies!
Except he’s our first, spent six months in hospital, has chronic lung disease, needs oxygen and has a tube up his nose.
When he cries and can’t breathe, we get desperate.
But he’s strong, he’s a machine!
He learns new things every day.
Today, for example, he can open his hands to pick up objects.
It may seem simple, even strange for a six-month-old, but he was tied to a bed for five months…
By the way, we’ve noticed that it’s significantly behind schedule…
As a precaution, we called in several medical professionals to diagnose him.
Because you already know the seriousness of the hospital he was in and at no point was this mentioned in his diagnosis for home care….
Understand that the more they save, the better!
The city’s most renowned pediatric neurologist and other motor specialists came to see him, and they all said the same thing: his delay is significant, and one side reacts less well than the other.
The neurologist asked us if he had had a cardiac arrest (characteristics of this difference in reflexes on one side).
We said no, because no doctor had informed us.
And Geraldine, our super nanny who has been with us since 31/07, told us that a nurse had told her and another person present that day that Gabriel had had a 40-minute cardiac arrest…
So a question arises…
Is this another hospital miscommunication, like “the nurse got the wrong file” (even though Geraldine asked her twice to confirm)?
Or did the hospital “forget” to tell us?
When in doubt, I complained to the hospital again, explaining exactly what I had just said.
In return I got, once again, a political answer where they don’t really give me any answers…
My question was simple, but their answers are always vague and abstract.
Today, we fight every day to ensure that Gabriel can develop properly.
We were also supposed to receive a mask for our NIV in the right size: they sent back the same one, too small.
In all honesty, I can’t stand them. They’ll end up in hell and die in agony. It can’t be any other way! (especially those who told me to have faith while they were doing their attrocities).
Fortunately, Gabriel’s smiles put me back on track and remind me that this little guy has an incredible zest for life.
We’re still hopeful that they’ll be able to live a normal life in a few years’ time.
And that’s what makes us want to get up every day and accompany him on his journey.
We don’t really think about the future anymore.
We avoid thinking about the past.
We just try to focus on the day unit and do what we can to make things work for it.
