A stable night with Paula at Gabriel’s side.
At 4am, the aerosols (Atrovent and Salbutamol) made him more agitated.
It’s been a difficult morning: lots of crying, two episodes where he almost choked on his abundant saliva.
In the middle of the day, the famous ventilation machine arrived.
A first test was launched… and it was an ordeal.
For us parents, seeing our son with this mask pulled tightly over his face – a “childish” version with a giraffe tube, but looking more like a gas mask – brought back many memories of his intubation.
The test was complicated:
– Give him a sedative to calm him down
– Remove the adhesive protecting the gastric tube.
– Removing the oxygen catheter attached with adhesives. Ten minutes of crying just for that. (sedative doesn’t work)
– Then connect the machine. But as I was moving it, the tube fell to the floor. Everything had to be disinfected and reconnected. Meanwhile, Gabriel was running out of oxygen.
– By the end of the maneuver, he was all white. He even had to take an X-ray to check that his probe hadn’t moved…
This afternoon, a second attempt was made, keeping the catheters in place. It’s still quite complicated to see him cry for Manuela, then white again…
But in discussions with the professionals, we learned that the machine’s air leakage rate was too high: instead of a maximum of 40, it exceeded 50.
In practical terms, this means that Gabriel isn’t getting all the oxygen he should, and that the machine, in these conditions, may not be providing the help he’d hoped for. Maybe the air is going, because he’s keeping his probe tube and oxygen catether underneath.
What’s more, it’s not the model we were expecting: it works, but remains limited. It’s probably the one we’ll be going home with. This may complicate things for the future.
The aim is not to keep this thing on 24 hours a day, but rather to do sessions to expand your lungs.
In short, another intense day, full of stress and fatigue.
I can’t wait until one day we can have a normal life.
