25/08

Busy night and morning

Last night, Gabriel was accompanied by a caregiver who helps us from time to time, and by Jacqueline, his “tatan godmother”. Thanks to their presence, Manuela and I were able to spend the night and rest together. And that’s a blessing in disguise, as it’s been a rare occurrence for the past 4 months.

Personally, I’m so nervous that I regularly have muscle spasms with grunting tocs when I try to relax…
Not to mention the screams I let out in my car to release the rage inside me.

When I arrived at the hospital at 7am this morning, I could see straight away that Gabriel was more tired than the day before. I asked the people in the room what had happened during the night: what medicines had been given, what changes had taken place.

I noticed that his oxygen catheter wasn’t properly positioned in his nostrils, which sometimes happens, but doesn’t explain such fatigue. I then went to check the medication at the nurses’ station: according to their records, the 5h treatment had been administered. However, the two people who were in the room claim not to have seen this medication given.

Faced with this contradiction, I asked for access to the surveillance cameras to confirm whether an orderly had entered at 5am. I was told that care had been taken, but was unable to provide any direct proof. I also sent a message to management asking for an explanation.

In the meantime, Gabriel’s condition continued to worsen, and he was given an early dose of the medication he had already received on Saturday (ATROVENT), which had done him a world of good and helped stabilize his condition.

Later, the nursing coordinator came to see us. She told us that an investigation would be launched to verify whether or not there had been an error. According to the orderly, he did administer the product….

As for the rest, I can’t tell you too much, because I don’t know who reads the blog, if you know what I mean…

What’s certain is that the hospital locks everything up legally.

In any case, I’d like to take this opportunity to thank them for their brilliant idea of forbidding parents from contracting their hospital staff outside working hours.

I hope that one day they’ll think about paying them better, before these same employees (the quality ones) go looking elsewhere for more dignified conditions.

Meanwhile, Mr. Big Boss of the hospital posts millions in Forbes…
Frankly, they could earn more if they made fewer mistakes. I have serious doubts about his entrepreneurial qualities. And yet he’s allowed himself to give advice on the Internet?
“Do as I say, not as I do!”
Word to the wise!

PlanB

This afternoon, we also had an important exchange with the Necker hospital in Paris. The doctors there confirmed that Gabriel’s condition is very serious, and the doctor told us that she had never seen a baby of his age in such a situation… We talked at length about treatment and a possible follow-up.
I won’t go into more detail here.

Treatments and equipment

This evening, Gabriel received the first dose of his third three-day course of pulsotherapy. Let’s hope it helps and that all goes well.
As a reminder, pulsotherapy involves the administration of high doses of corticosteroids to block inflammation, but has the side-effect of temporarily disabling the immune system…

And finally, the good news is that, after much asking and asking, it seems that the new Trilogy EVO ventilation machine (and not 100) should arrive to replace the one he’s currently using. All we have to do now is get a professional physiotherapist who knows how to use this machine (letter, administration, authorization, person who follows her closely…).
This physiotherapist is so afraid of going into this hospital that the last time she went in, she crashed her car on the way out because she was so stressed.
Have you ever heard of dictatorship?

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