This weekend, Gabriel took a short trip by ambulance for an examination of his nasal passages down to his larynx.<\/p>\n\n
The aim was to understand the origin of a strange noise he sometimes makes when breathing.<\/p>\n\n
The doctors suspected reflux linked to the gastric tube, but the examination revealed nothing abnormal.<\/p>\n\n
Breathing remains an important point of attention.<\/p>\n\n
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. <\/p>\n\n
He moves better and better, smiles more, calms down, starts to manipulate objects and tries to communicate.<\/p>\n\n
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.<\/p>\n\n
This week, he also ate a little milk (a kind of cream) through his mouth – a small step, but a great victory!<\/p>\n\n
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. <\/p>\n\n
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. <\/p>\n\n
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.<\/p>\n\n
An infusion pump would stabilize all this. We hope it will be available soon. <\/p>\n\n
Today, for the first time in a long time, Gabriel missed his respiratory physiotherapy sessions due to an unforeseen scheduling problem. <\/p>\n\n
It’s frustrating, because these sessions are essential to his stability.<\/p>\n\n
But tomorrow, things should be back to normal.<\/p>\n\n
For the past two days, we’ve also been taking him out for a few minutes in the building’s garden.<\/p>\n\n
He loves to watch everything that moves… except the wind!<\/p>\n\n
Kitesurfing will come later \ud83d\ude09<\/p>\n\n
Many French people ask us why we haven’t returned to France yet.<\/p>\n\n
The answer is complex.<\/p>\n\n
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. <\/p>\n\n
When his condition stabilized, it was August…. A time when it’s difficult to get medical answers in France. <\/p>\n\n
Today, a return trip remains complicated for practical reasons:<\/p>\n\n
hospitalization at home would be possible, but finding professionals available to come several times a day remains a real challenge.<\/p>\n\n
After a great deal of research, few respiratory physiotherapists offer this type of intensive home care.<\/p>\n\n
And obliterative bronchiolitis is a rare disease in France.<\/p>\n\n
Medical teams encounter it infrequently, unlike in Brazil, where cases are better known and treated more regularly.<\/p>\n\n
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. <\/p>\n\n
At the same time, we’ve begun to build up an excellent, specialized private team to fill the gaps left by home hsopitalization.<\/p>\n\n
Gabriel benefits from top-level care, and this gives him every possible chance.<\/p>\n\n
On the other hand, all this comes at a cost… which makes us a little anxious.<\/p>\n\n
We are continuing to take steps to ensure that its follow-up is better supervised, and that certain equipment is officially supported.<\/p>\n\n
We hope this will come to fruition, as Gabriel’s needs are real and well-documented.<\/p>\n\n
At the same time, we continue to do our utmost to provide her with the best possible environment.<\/p>\n\n
Every smile, every new gesture, every more fluid breath is a victory.<\/p>\n\n
Thank you all for your messages, your presence and your support.<\/p>\n\n