Last night, Gabriel was weak. His temperature was low (34.8), as was his pulse ox. We were scared (post-traumatic hypervigilance) because the last time it happened it wasn’t a good sign (temp 32 at the worst time).
This time, an X-ray, blood tests… and in the end: nothing. So much the better!
This morning, a doctor came in with a new diagnosis.
Different again.
Here, medical truths have a shelf life of three days. Then they change.
And each time, our hope wavers a little more.
1. This time it’s serious
A pulmonologist consulted online by the hospital reviewed every X-ray, every CT scan.
Her verdict: Gabriel’s bronchiolitis obliterans is serious. Not mild. Not moderate, as we were previously told. Serious.
So Gabriel has a serious incurable disease today. Thanks guys!
After 4 months, it’s heartwarming.
She therefore recommends that the hospital increase some of the Pulmicort treatments.
Note that she hasn’t even seen Gabriel on video….
While we ask for a consultation with the pulmonologist who follows him physically… But on the face of it, that’s not possible.
Common sense doesn’t exist.
2. Pulsotherapy
The third pulsotherapy, scheduled for August 25, will depend on its progress.
But the discourse is constantly changing: first necessary, then no, then yes, then no again, tomorrow it will be yes, we bet?
Each turnaround is like a punch in the stomach: we no longer know who to trust and we no longer believe anyone.
Some doctors even tell us not to listen to the other doctors.
Do you know the house that drives you crazy?
3. Speech therapist
Gabriel will have sessions with the speech therapist, who will help him relearn to swallow and eat on his own.
That’s great news!
4. Irritations and secretions
His nose and throat are irritated and full of secretions, sometimes with blood.
At first they thought it was an allergy, but according to the doctor of the day, it could be the oxygen that’s drying out his nostrils.
They’re going to moisten him, maybe add some corticoids to the nose if necessary.
I think it’s a good idea.
5. Sedatives
This seems to be the last week with strong sedatives like metadone. That’s a good thing.
Then maybe we’ll be able to do the tests to find out if our son’s brain is 100% ok after all the stages he’s been through.
6. Hospital discharge
One day we’re told it’ll be out in 3 days, then finally in 1 month, and today it was 5 days.
Tomorrow in 1 month?
Their forecasts don’t make sense and we don’t believe them anymore. We don’t want any more emotional yo-yoing.
They drive us crazy
Generally speaking, accepting this diagnosis is almost impossible for us.
And accepting that it’s classified as “serious” when, just a few weeks ago, some people had a mild case… it’s horrible.
It’s as if you’d entrusted your life’s most precious possession to a repairman you trusted.
You saw him make strange gestures, but you thought: “That’s his job.”
Then, little by little, you began to doubt.
And one day, he gives you your possession back. Damaged. Damaged. And he tells you that it’s “normal”, that it will be fine… God willing.
But was it God who let the bacteria into the hospital through negligence, or human debility?
One doctor even told us that when you make complaints, you increase the chances that the patient’s condition will deteriorate. An equation that would put Einstein on the floor!
So that’s the magic recipe for driving people crazy.
And to return to the positive
Because it’s important to stay the course. We say to ourselves:
- Gabriel has already demonstrated his strength and courage in the past.
- I’ve read in several studies that 80% of children improve as they grow. Unlike adults who have bronchiolitis obliterans (often due to electronic cigarettes).
- The pulmonologist who saw him in physics told us that he might one day be able to live a “normal” life.
- He interacts well and smiles regularly. Looking at him when he’s calm, you’d sometimes think there was nothing wrong with him.
So we try to hold on to that as best we can.
In parallel :
We’re looking into the possibility of repatriation to France. If this could be done without any risk, we might consider starting a fund to finance the trip (nothing certain for the moment… but since we can’t stand them here anymore…).
We are still actively looking for someone to adopt our cat Pompom. If you are interested, please contact me.
We’re due to sign the lease for the apartment shortly.
