Hello, son,
A quick recap of the last few days.
On Friday, you had a blood test.
Most results are available and quite good. No signs of infection. Oxygenation is correct.
Unfortunately, due to a lack of organization, we forgot to prescribe ACTH (which was much too high last time).
We realized this at the lab, and they didn’t want to add it at the last minute…
You’ll have to go back just for that.
On Saturday, your genetic DNA test results were also released.
No apparent genetic abnormalities.
That’s excellent news!
You continue to eat very well with a spoon, and you love it.
However, you also like to turn every meal into a painting session.
Your dad, who loves order and cleanliness, breaks a sweat a little at every meal.
In the coming weeks, and on the advice of your pulmonologist, we’re going to try to use your feeding tube as little as possible to see if you can do without it. The nutritionist and speech therapists are helping us move in this direction.
We need to be careful with liquids that cause you reflux and thus a risk of bronchoaspiration.
We’ve also ordered a product that allows us to give medication via a pacifier. The goal is clear: to remove this feeding tube.
Regarding breathing, there’s an improvement, but you remain dependent on oxygen (even if not a high amount).
Yesterday, we did a test. Fifteen minutes without oxygen on the balcony. Your saturation dropped to 88.
It’s going to take time, but we’ll get there!
Yesterday, Titia Zilda also visited.
She had helped us a lot before your hospitalization and accompanied us the day we went to the hospital. Her presence was a comfort.
Finally, this weekend we made a new post on the Instagram account.
The second one was about introducing our family, and my son, you were a big hit!
A surprise is coming tonight!
I love you
Dad
