Last night
Last night, Gabriel spent the night with Amelia and me. Early in the evening, we reported that his stomach tube was a strange color. We were told it was normal.
At around 1am, Gabriel lost his probe. We then realized that it had almost come out the day before, and that the color we had seen was actually the end of the tube, tinted by the iron ions that color absolutely everything.
The problem was that he had been given milk and medication. A whole hour passed without any professional coming to check on his condition or proposing a solution to continue administering the medication. When I went to ask for help, I was told to wait, as another child was in a bad way. I then asked how they decided which one to save when two children were unwell at the same time. There was no answer. This silence made me even more anxious.
I finally called Manuela so I could make a rational decision.
An hour later, an X-ray was taken. We feared that the milk had passed into the lungs, but fortunately this was not the case. Nothing in the lungs, apart from the two atelectases already aggravated the day before. A new tube was inserted and checked by X-ray.
Day
Today, Manuela was on the front line. Following a hectic night, she was much in demand by management. In short, according to them, yesterday’s situation was “normal”. They also reminded us that we were not allowed to call on hospital staff outside their normal working hours to help us.
The truth is, we’re often at our wits’ end. This diagnosis of incurable bronchiolitis obliterans is a daily challenge. Seeing Gabriel struggle to breathe and thinking that the next few years will be a constant battle sometimes plunges us into gloomy thoughts. And even if his smiles erase this pain in a few seconds, it often returns in the evening, just before going to sleep…
In spite of everything, we cling to the idea that he still has the trump card of his young age: his lungs will continue to grow and adapt. That’s our only hope. We hope with all our hearts that he will be able to live a normal life!
So, without further ado, today I went apartment-hunting. I found one in the Papicu district that I really like. It remains to be seen whether all the parameters line up (installation of Gabriel’s home care, etc.).
In the late afternoon, I returned to the hospital to replace Manuela, who was exhausted and in low spirits.
Apart from all that, Gabriel remains stable, even if his respiratory discomfort has become more marked since yesterday. He still gives us lots of smiles and enjoys playing with us.
Finally, we’re continuing to sell our “useless” belongings in this new life…
Today, we sold our quad bike, Georges, with which we had so much fun riding on the beaches. We hope to be able to come back to our house one day and, why not, buy a quad to take Gabriel to feel the wind on his face, with the sunset on the beach in the background.
