11h57
Gabriel spent the night with his dad and then his mom.
Around midnight, I took Gabriel in my arms for a moment of comfort. But I soon noticed a strange noise, like a deep snoring. I called the physiotherapist on duty, whose empathy was reminiscent of a prison door. She explained that he had secretions, which is common in his situation. She gave him suction through his nose and mouth, and that’s when I got scared: there was blood in the secretions.
Fortunately, she reassured me (always with her legendary empathy), explaining that the previous morning, a nasal septum had already bled slightly during an aspiration. For my part, I think this is also due to the fact that he hasn’t had heated and humidified oxygen for two days, after two months on warm oxygen. His fragile little nose dries out more easily with room-temperature oxygen.
Anyway, not so bad according to them, but frankly impressive at the time.
Another astonishing moment: someone changed his oxygen flow rate without telling us. His setting went from 1 to 2 liters, without our knowing who changed it. Neither the doctor nor the physiotherapist seemed to be behind the change. Not dramatic, but mysterious…
Despite all that, the night was stable. No fever last night (just a little last night, as I told you), correct saturation, and above all an ever more beautiful Gabriel, who’s starting to take on nice little cheeks!
Good news this morning: his blood tests show that the infection is subsiding, and the chest X-ray is better, according to the Dr de Nice who is monitoring his case remotely.
We’re waiting to see what the doctors have to say this afternoon.
19h58
When I arrived at the UTI this afternoon, I got a bit of a shock: Gabriel was lying flat on his stomach. The last time I’d seen him in this position was in a critical situation, when he couldn’t breathe. Seeing him again brought back painful memories, and I didn’t take it well.
I quickly asked what was going on. The team explained that it was a test to help clear his lungs and relieve some of the redness, as he spends a lot of time on his back. But I didn’t get the reassuring confirmation from the doctor until 2 hours later. In the meantime, I had a small moment of panic, aggravated by the presence of a sloppy, unmasked orderly in the room. The same one who had left Gabriel with a temperature of 32 degrees…
Finally, the doctor explained that Gabriel was fine and that this position was part of a trial.
The other doctor also gave me some good news: if the next results remain positive, Gabriel will soon be able to leave the intensive care unit. I broke down.
In the afternoon, I was able to take him in my arms. His breathing is still irregular, with a deep draught, like when he had bronchiolitis. He will need physiotherapy and follow-up to improve this gradually.
This evening, we started to organize his discharge. It’s imperative that he’s in a single room, and that he’s followed up impeccably (not like when we arrived).
Gabriel will be discharged with a gastric tube running through his nose for feeding, a PICC catheter in his neck to continue his antibiotics (for another 15 days), an oxygen cannula, two months of corticosteroids, and many tests to come: genetic, neurological and ophthalmological check-ups…
Then, when he is discharged from hospital in a few weeks’ time, he will have to follow up with a multidisciplinary team: pulmonologists, physiotherapists, nutritionists…
The aim is for him to gradually return to a normal life as a happy, healthy little boy as soon as possible.
Thank you for continuing to accompany us on this adventure.
See you tomorrow for more news from our champion Gabriel!
