10:27 AM
The night with mom went well.
The blood results seem a little less encouraging today than in previous days (some indicators are better, others are not), but we are waiting for the doctor’s opinion to know more.
We clearly don’t have the skills to interpret this correctly.
Today, they will remove the dialysis catheter located in the abdomen (just below the navel).
Also, unrelated, but while talking to a doctor yesterday we learned that since COVID, viruses have evolved. Here’s a quick summary via GPT (for public interest):
Since COVID, respiratory infections in children have radically changed, both in France and Brazil.
Barrier gestures blocked the circulation of viruses for 1 to 2 years, preventing children from catching certain benign diseases that contribute to building their immunity.
Result: when measures were lifted, there was a massive rebound, with longer, stronger, and less predictable epidemics.
In France: bronchiolitis is no longer limited to winter. It starts earlier, lasts longer, and can affect older children.
In Brazil: the season now extends from January to June (previously it was 2 months), with more viral and bacterial co-infections, sometimes aggravated by precarious hospital conditions.
Conclusion: be extra vigilant and stay informed if you have young children.
I’ll keep you updated later.
3:17 PM
We saw the doctor, here’s the news:
The kidneys are doing well, the dialysis catheter has been removed.
Regarding the liver, there’s an increase in AST today (from 227 to 397) and other things as well, but gamma GT has decreased (from 780 to 675). The values remain well above normal, but according to him, this corresponds to a typical profile after coming off “ECMO. As a precaution, he will still ask for the”“hematologist’s opinion, even though”“he didn’t think it necessary until” now.
The oxygen results were very strange this morning. He confirmed that today’s blood gas analysis was venous (not arterial, as erroneously indicated on the paper), which explains some anomalies. Nevertheless, he slightly increased the oxygen: Gabriel is still weak, and his little body couldn’t keep up with 30% concentration. So we’ve gone back to 35%.
He told us that Gabriel is still too fragile to be extubated. The problem is mainly muscular: he has lost a lot of mass and needs to be gradually refed. A specific nutritional protocol will be put in place. It will take at least 15 days for him to regain enough strength, and only then can we consider removing the tube. He will therefore probably remain in the ICU for at least another 15 days (and possibly a month in the hospital, or more…).
To prevent any new infection (our biggest fear), they are maintaining the current antibiotic treatment.
Overall, the doctor was reassuring: we just need to be patient.
And the truth?
Even if things are progressing in the right direction, it’s hard to be patient.
We want to hold him in our arms, to get back to a normal life. But we can’t…
Sometimes, people ask me how I’m doing.
A good metaphor would be to say that my belly has been cut open, between the heart and the stomach, and every time the hemorrhage starts to calm down, they give it another little cut with the scalpel.
We’ve already started counseling with psychologists.
But it’s certain: all three of us will come out of this ordeal different, with difficult images to erase.
It’s been a few days since I’ve asked you, but I think we need a little dose of good energy… Your prayers, your good vibes, your love… whatever you can offer according to your beliefs.
Thank you
Come on, we’re heading for this new milestone of 15 days… and we’re keeping our heads high!
We will leave this hospital all three of us, in full health and live the best life possible!
7:45 PM
We had a session with a psychologist and a doctor which did us a lot of good.
It was an opportunity to say everything we have on our minds. And there’s a lot to tell!
It seems that at the same time, our little boy has also regained some energy.
According to them, he would be in “withdrawal” from the medications, which is why he was less awake this morning.
This evening he was perfect! Eyes wide open, oxygen saturation back to 100%!
Also, to finish, I had to remind a nursing assistant who was taking care of Gabriel that he needed to wear his mask above his nose and not below his mouth. The kind of basic thing in an intensive care unit, but that needs to be repeated…. ?!
Patience…
