This weekend, Gabriel took a short trip by ambulance for an examination of his nasal passages down to his larynx.
The aim was to understand the origin of a strange noise he sometimes makes when breathing.
The doctors suspected reflux linked to the gastric tube, but the examination revealed nothing abnormal.
Breathing remains an important point of attention.
A physiotherapist told us that she had never seen a case of bronchiolitis obliterans improve with time. It’s not easy to hear, but we’re not giving up hope, because every day, Gabriel is making progress.
He moves better and better, smiles more, calms down, starts to manipulate objects and tries to communicate.
We’ve also managed to reduce his oxygen to 0.8 L/min, a great step forward, even if he still has a significant respiratory draught.
This week, he also ate a little milk (a kind of cream) through his mouth – a small step, but a great victory!
He doesn’t like the spoon, but he loves it when we put the milk on his teat. A special bottle is on its way to continue these trials.
He also had a small reflux attack which required emergency aspiration to avoid bronchoaspiration. A reminder that his balance remains fragile, and that every detail counts.
We still have a few problems with the feeding system: without a device to precisely regulate the flow of milk via the probe, the flow sometimes varies too rapidly, increasing the risk of regurgitation.
An infusion pump would stabilize all this. We hope it will be available soon.
Today, for the first time in a long time, Gabriel missed his respiratory physiotherapy sessions due to an unforeseen scheduling problem.
It’s frustrating, because these sessions are essential to his stability.
But tomorrow, things should be back to normal.
For the past two days, we’ve also been taking him out for a few minutes in the building’s garden.
He loves to watch everything that moves… except the wind!
Kitesurfing will come later 😉
Why we stay in Brazil
Many French people ask us why we haven’t returned to France yet.
The answer is complex.
At the height of his illness, Gabriel was too frail to be moved. The doctors had to operate directly on him in intensive care, so critical was his situation.
When his condition stabilized, it was August…. A time when it’s difficult to get medical answers in France.
Today, a return trip remains complicated for practical reasons:
hospitalization at home would be possible, but finding professionals available to come several times a day remains a real challenge.
After a great deal of research, few respiratory physiotherapists offer this type of intensive home care.
And obliterative bronchiolitis is a rare disease in France.
Medical teams encounter it infrequently, unlike in Brazil, where cases are better known and treated more regularly.
Winter is finally here in Europe, and with it the worst season for viruses. This is something to be avoided for the first 2 years.
At the same time, we’ve begun to build up an excellent, specialized private team to fill the gaps left by home hsopitalization.
Gabriel benefits from top-level care, and this gives him every possible chance.
On the other hand, all this comes at a cost… which makes us a little anxious.
What’s next?
We are continuing to take steps to ensure that its follow-up is better supervised, and that certain equipment is officially supported.
We hope this will come to fruition, as Gabriel’s needs are real and well-documented.
At the same time, we continue to do our utmost to provide her with the best possible environment.
Every smile, every new gesture, every more fluid breath is a victory.
Thank you all for your messages, your presence and your support.
Your words carry us and give strength to the whole family.
See you soon for the rest 💛
