Hello, son,<\/p>\n\n
It\u2019s been about 10 days now since we came back home.<\/p>\n\n
At first, you had a bit of a fever. <\/p>\n\n
Then your breathing was a bit strange, with some secretions. <\/p>\n\n
I don\u2019t know if it was us being stressed that something might happen to you, or if it was simply you, with what you already have regularly. Let\u2019s say it\u2019s probably linked to your condition, and that it stays within something \u201cnormal\u201d for you. <\/p>\n\n
What I can say today is that your breathing and your lungs are overall stable.<\/p>\n\n
Like in Fortaleza, you wake up pretty well in the morning, then as the day goes on you get tired, with more noticeable retractions. That\u2019s something we already knew. <\/p>\n\n
As for your oxygen saturation, you\u2019re pretty stable too. You stay above 92 all day, sometimes with a bit of oxygen, between 0 and 0.5, and sometimes up to 1 when we do your physio sessions with masks like Enbout or TR3. You cry a lot then, but overall there\u2019s nothing new. And that reassures us so much! <\/p>\n\n
The house, on its side, seems healthy.<\/p>\n\n
We air it out all day. The AC runs too. We installed St\u00e9rilair units pretty much everywhere, as well as dehumidifiers. And above all, the work done with your uncle Rapha\u00ebl helps a lot. The wall in your bedroom stays dry, and I think that changes a lot. Thanks again to him. <\/p>\n\n
I spend time with you in the morning and in the evening, and it\u2019s always a joy to see you wake up. You kick your feet in your bed to tell me, \u201chey dad, I\u2019m awake.\u201d Then, when I show up with my guy face that gets up every day at 2 a.m., you laugh. And then we play peekaboo. And you laugh again. <\/p>\n\n
Despite everything you\u2019ve been through, you\u2019re really a calm child, and we\u2019re very lucky.<\/p>\n\n
You keep trying to crawl. It\u2019s not quite there yet. You also stand up by holding onto the sides of your playpen when you\u2019re sitting, then you fall back onto your little bottom. <\/p>\n\n
You\u2019re also trying to say things. We\u2019re listening out for \u201cdad\u201d or \u201cmam\u00e3e.\u201d <\/p>\n\n
Socially, nothing new. We don\u2019t go out much to avoid any risk of catching a virus. <\/p>\n\n
In the end, we\u2019re allowing ourselves a 30-day trial at home to see what we\u2019ll do next.<\/p>\n\n
When it comes to food, we have good news.<\/p>\n\n
You\u2019ve gained weight. You\u2019ve gone over 8 kilos! <\/p>\n\n
But it\u2019s still a real challenge to get you to eat.<\/p>\n\n
You refuse any food if it isn\u2019t mixed with water. And the water has to be clear. You look at the spoon, and if it isn\u2019t clear enough, you refuse. <\/p>\n\n
So we have to be clever. We have to catch your attention with birds or something else, and when you open your mouth, take the opportunity to feed you. <\/p>\n\n
Your mom makes super high-calorie meals to reach 1,200 calories a day. And your nanny Fabi often saves us. <\/p>\n\n
It\u2019s complicated, but we know it\u2019s a long process, with everything you\u2019ve been through.<\/p>\n\n
We\u2019re staying patient. And above all, we hope you won\u2019t need the gastrostomy that\u2019s been hanging over us for a while. <\/p>\n\n
For now, we\u2019re holding on. And that\u2019s already a victory. <\/p>\n\n
We\u2019ve also been asked about the cats.<\/p>\n\n
For now, we\u2019d rather wait.<\/p>\n\n
There are allergy risks, and we don\u2019t want to add that on top of everything else. <\/p>\n\n
And then, if we ever had to leave again in an emergency, it would be one more thing to manage. <\/p>\n\n
So we\u2019re keeping it simple, step by step.<\/p>\n\n
On the healthcare side, you\u2019re well supported.<\/p>\n\n
You have a \u201cgeneral\u201d physio with lots of experience, especially in hospital, who comes five times a week.<\/p>\n\n
And two respiratory physios who alternate, also five times a week.<\/p>\n\n
It\u2019s going very well.<\/p>\n\n
Your mom also does an enormous amount.<\/p>\n\n
She learned techniques like TR3 and AFE.<\/p>\n\n
And we also have professionals online like we did in Fortaleza.<\/p>\n\n
Yesterday was Saint Joseph\u2019s Day in Barrinha.<\/p>\n\n
It\u2019s a religious celebration around Saint Joseph.<\/p>\n\n
Here in Cear\u00e1, they say that if it rains that day, it\u2019s a sign of good harvests. And in a fishing village like ours, that means there will be fish. <\/p>\n\n
\n (If I\u2019m not mistaken, because my religious knowledge is still limited.)<\/em>\n <\/p>\n\n For the occasion, your aunt Fran, with people from the church, organized a little stop in front of you during their parade.<\/p>\n\n So we drove to the end of the street, then they came by and stopped in front of us.<\/p>\n\n They gave you a blessing. For your full recovery, for your health! <\/p>\n\n It was very emotional.<\/p>\n\n Because beyond religion, it was above all a human moment.<\/p>\n\n A moment when we felt supported.<\/p>\n\n And above all, a moment that marked something important:<\/p>\n\n We came back home. To our village. And that\u2019s a victory! <\/p>\n\n And all these people prayed for you when you were in the ICU so you could come back here. <\/p>\n\n And together, we did it!<\/p>\n\n THANK YOU!!!<\/p>\n\n I\u2019m making a lot of progress on this site.<\/p>\n\n I added a space for professionals. I\u2019m working on SEO. I\u2019m adding resources. <\/p>\n\n My goal is clear.<\/p>\n\n I want this site to become the global reference for bronchiolitis obliterans.<\/p>\n\n A place where families, patients, doctors, and researchers can come together.<\/p>\n\n Share. Understand. And above all, find solutions together. <\/p>\n\n I\u2019m putting a lot of time into it. Because I know it\u2019s important. <\/p>\n\nBOCommunity.org – Site for bronchiolitis obliterans<\/h3>\n\n