Hello, son,
These past few days have been quite happy. You’re spending time with your Grandma Michelle and Grandpa Robert.
It’s wonderful to see you with them. I think they are very happy.
After what they saw in May, they were shocked, especially by that hospital where you were.
Today they see the quality of care you receive at home, and they even wonder if it’s not better in Brazil than in France. That’s the whole paradox of Brazil. I think Grandma and Grandpa will write an article for you when they leave, and you’ll be able to get their perspective.
In parallel, we continued to work on the goal of removing your gastric tube, at least initially by avoiding its use (to simulate). The real problem remains liquids. Water, especially. As soon as we give you water, it quickly causes reflux. At the same time, you need it. Since you’ve been eating more with a spoon, your stools are harder. They clearly lack water. That means your body isn’t getting enough. It’s a complex situation. The professionals don’t always agree among themselves. Your mom and I sometimes feel lost. And this uncertainty creates tension.
Last night, we had a problem. At midnight, you had your milk. It was also the last night with milk, according to the nutritionist. We connect the bottle via an “equipo” (I don’t know what that’s called in French). And the equipo to the tube. Problem: the tube is worn out and the equipo no longer stays in it. The milk went all over your bed. This tube is putting pressure on us.
This morning, upon waking, the person who was with you to monitor you told us that your breathing wasn’t good. She noticed more significant retractions than usual. And indeed, that’s the case…
In parallel, your tube seems obstructed. Nothing is passing through. Neither medication nor water. On the doctor’s advice, we tried sparkling water. It didn’t change anything. We don’t know what to do yet. We also don’t know if it’s related to your breathing being worse today.
Your mom and I are tired.
And each new problem adds another layer of nervousness and friction.
We try to stay positive and hope everything will be resolved today.
I love you
Dad
