10:23 AM
Night and Morning
Gabriel had a relatively stable night with his mom until about 2 AM when he started crying for no apparent reason.
An X-ray was requested but revealed nothing abnormal. The caregivers think it could be discomfort or frustration, without any worrying clinical signs. A mild sedative was administered, after which he was able to fall back asleep.
At 7 AM, he was awake and calm, then he slept a little before starting to cry again.
Despite an examination and a diaper change around 8:15 AM, no cause was identified, and a second sedative (fentanyl) was given to him.
From a medical standpoint:
- The tracheal sample, initially scheduled for yesterday, is finally to be taken today.
- The oxygen machine has been reduced to 60%, and Gabriel has a stable saturation at 99%.
Life at the Hospital
We are stressed by erroneous communication with the “medical team, which reinforces our feeling of” uncertainty although we always try to stay positive!
Yesterday, the diagnosis concerning his lung changed twice according to the doctor: first a pneumothorax, then a pneumatocele, while the X-ray report confirmed a pneumothorax.
An X-ray was supposed to be done last night at the doctor’s request, but at 2 AM, it still hadn’t been done.
When Manuela asked why, she was told that the radiology department was waiting for a call… which apparently had never been made by the ICU.
Finally, for a week, we were told that the tracheal sample would be taken on Monday. Then yesterday morning, a doctor told us it was no longer planned, then another reversed this decision… and it’s only today that the procedure will be carried out. (Have we lost a day?)
And when we point out these inconsistencies, we are told that we should not interfere with the medical process, so as not to disturb them…
We can imagine that they also want Gabriel to be discharged as soon as possible! But these frictions are stressful and annoying…
I have never worked in a hospital and I don’t know how it is elsewhere?
But here, we notice that there are frequently organizational problems between different departments.
The biggest example remains the day when they had to remove the ECMO and the management had not given authorization, and the pharmacy had not prepared the necessary materials for the operation (even though it had been requested in the morning)…
The doctor had to go down to the management himself to complain! The kind of thing that’s reassuring!
Apparently, this is normal… and we should keep quiet…
If Manuela and I did the same thing with our clients, I’m not sure we could pay the hospital insurance every month!
8:00 PM
During the day, Gabriel continued to have small tantrums, crying a lot.
They took more X-rays to check, and his lungs have not changed. So it’s not that.
Unfortunately, they will put him back under sedation, as they think he’s simply had enough of all this, but we can’t leave him in this situation.
The tracheal sample to check if the bacteria is still present has been taken. Results expected at the end of the week.
We hope it will no longer be there so we can start pulse therapy.
In parallel with everything that’s happening, we are actively continuing our search for contacts who can help us. Today, we received a response from the Femme Mère Enfant Hospital in Lyon. The head of the pediatric pulmonology department responded to me and gave his second opinion, which I shared with the team here.
It’s possible that Gabriel was so severely affected by this bronchiolitis for various genetic reasons. Tests will be carried out when he has recovered. This is a possibility that shouldn’t be ruled out.
It may also simply be due to the two bacteria he contracted in the hospital…
In the meantime, they have validated the ongoing treatment and are now integrated into Gabriel’s follow-up.
The doctor nevertheless told us that his lung had returned to the state it was in before the pneumothorax two days ago.
So we are still, little by little, on the path to improvement. But the road remains long (weeks, months?) and patience is essential.
In parallel, we are organizing for the future. We have found new owners for our two cats, and we are going to start renting out our house to cover the expenses we have while staying in the city.
