Hello my son,
The past two days were Christmas.
On Christmas Eve, once you were asleep, we had dinner with Grandpa and Grandma on the balcony.
We had a wonderful time together.
Then, your mom and I decided to sleep on the floor in your room, by your side.
On Christmas morning, when you woke up, we held you in our arms.
You gave us so many smiles, and I think it was the best Christmas gift we could have received.
Afterward, we tried to take a shower together, just like when you were little after you came home from the hospital, but it didn’t work out very well. The shower is too small, and you didn’t like it 🙂
Meanwhile, the physical therapist is starting to do tests by taking you off oxygen.
It turns out you’re reacting quite well.
Christmas miracle?
Of course, you don’t have the oxygen saturation of a child with full lung capacity, but you don’t drop below 90, and you’re doing really well!
Your heart rate and breathing effort increase to compensate, but you manage.
You just need to rest more regularly when you exert yourself, but you’re coping well.
This might be abstract for those reading this article, and I’ll take this opportunity to provide an explanation.
If you’ve ever seen a child with the chest retractions of bronchiolitis, well, Gabriel has these retractions permanently due to his bronchiolitis obliterans, even with good oxygen saturation.
For this reason, he uses a lot of energy and needs to eat to compensate for all the energy expended.
And since you seem to be reacting quite well, we’re going to continue in this direction by regularly doing exercises without oxygen, at least two hours a day.
Now that you no longer have the feeding tube, everything should theoretically become simpler. We can already see it.
We just need to be vigilant about respiratory viruses.
Yesterday, on the 25th, Grandpa dressed up as Santa Claus and came to visit you.
He even prepared a little song for you that he practiced for several days with Grandma.
It was very touching.
You looked at him with your big eyes, serious, focused, then you cried.
Afraid of the beard or the bell?
He came back without both, and then you stopped crying.
You danced with him to a little DJ toy he brought you.
Your mom and I are full of gratitude to be able to spend all these good moments together after everything we’ve been through.
The past two days, I’ve cried regularly.
A strange mix.
Joy, because we survived and because you’re getting better every day. Your progress this last month is incredible.
And sadness too, as if the hospital’s past haunted me.
I think of all those parents who were our neighbors in the ICU and who weren’t so lucky.
Too many children left there. Too many parents spent Christmas with an impossible void to fill.
I think of them often, and their cries still echo in my head.
Only those who have been through this hell can understand. And I wouldn’t wish that on anyone, not even my worst enemy, and you know I hate him…
But in any case, today I’m happy.
Because we did it, son.
We spent Christmas all together, and it was perfect.
We couldn’t have done better.
I love you, my son.
Dad
