24/09

Last night started off a little hectic.

At around 10pm, Bastien called us because Gabriel’s medication was missing: Spiriva, a small aerosol spray.

It seems that in anticipation of Gabriel’s outing, which should have taken place yesterday, the bottle had been placed in the nightstand drawer and resealed incorrectly, causing the necessary gas to leak out. As a result, when it came time to use it, there was nothing left.

So we had to rush out and buy one in the middle of the night, because only Gabriel has this drug at the hospital: so there’s no stock.

The rest of the night was more peaceful.

This morning, Manuela and Amelia took over from Gabriel, allowing Bastien and Geraldine to take a breather.

At 10 a.m., Manuela called to tell me that Gabriel would be coming out soon.

But, as is often the case here, we had to… wait. At 3pm, we were told that no ambulance was available. After more than 24 hours of waiting, the frustration began to mount. I filed another claim (I’ve lost count…). In less than five minutes, I had found myself an ambulance available within 20 minutes. But the hospital prefers to use its own ambulances, unnecessarily lengthening delays, but it’s better for their wallet!

Finally, an outpatient ambulance arrived around 4pm. Gabriel was able to leave the hospital with his little oxygen bomb, a very emotional moment: Manuela burst into tears, and I immortalized his discharge in photos and videos.

Gabriel then took the ambulance to the apartment, accompanied by his mom and Amelia, while I followed in the car.

On arrival, an unexpected scene: Bastien, who was supposed to open for us, had stuck a knife in his arm while taking something from the sink.

Do you know what bad luck is?

We got Gabriel settled in, and I immediately took him to hospital, where he received two stitches and a course of antibiotics. More fear than harm…

Meanwhile, Manuela and Amelia got Gabriel settled in his room and began home care: administering medication, preparing milk and organizing equipment.

Later, we had to return to the hospital to pick up a missing prescription.

And now, at 12:15, Gabriel is sleeping peacefully in his room. Manuela has gone to bed.

Tonight I stay up with Victoria. The good news is that he no longer has to take any medication at night: the last dose is given at 10pm, then it starts again at 5am. We also have to give him milk every three hours via the tube.

After 150 days in hospital, a new life begins!

A little scary because of the medical side and her bronchiolitis obliterans pathology, but intense and full of hope!

Our next objectives are firstly to remove the gastric tube so that Gabriel can learn to eat normally again, and then, in several months (years?), to go permanently without oxygen (currently 1l/min). We’re very hopeful that this will happen quickly (one year, according to the pneumologist)!

In any case, we’ve come a long, long way. And now we want to live!

Finally, I’d just like to congratulate my little son. He has gone through all these stages with such courage and determination to live!

Bravo my son! You really are the strongest!

Thanks also to all of you for supporting us every day! Thank you for your music, your videos, your messages of love, your prayers and your support. It’s all been really difficult, and it was important for us to have you by our side.

We’re continuing the adventure together!

Tomorrow I’ll share Gabriel’s treatments with you. My aim is that this blog will also help other parents going through the same battle.

And so I will continue to share news of Gabriel and his evolution.

Don’t hesitate to leave your email address at the bottom of the page, and I’ll contact you later about the association.