Hello, son,
This morning, I’m writing to you from our balcony. It’s 5:25 AM.
Last night, we had Titia Nil helping us—she comes every other night.
On those nights, she manages the NIV when you go to sleep, usually from 8 PM to 11 PM, then checks during the night to make sure you don’t get tangled up with your oxygen tube around your neck, and comes to see you when you wake up.
It’s great because it gives us a night without responsibility where we can sleep, unlike other nights where your mom and I take turns making rounds to handle all these tasks.
Weight and Food
The food battle continues. We tried something new: “Mucilon,” on recommendation, because apparently all babies love it. But we think it made your reflux worse because of the traces of cow’s milk, and your allergy to it.
Your speech therapist and gastroenterologist think you still have reflux issues. So we went back to the medications we had gradually stopped. You’re back on Domperidone. We really hope it will help you want to eat again, because seeing you struggle at every meal is hard. If that’s not enough, we’ll go back to Esio too. You haven’t gained weight in several weeks now…
What’s paradoxical is that at the same time, you’re starting to eat pieces of food with the speech therapist without too much trouble, but when it comes to eating baby food or drinking milk, you close your mouth and cry.
And even more paradoxical, now you love drinking water.
New virus
A few days ago, you started having a sore throat, then sneezing a lot and coughing.
Today, I think you passed this virus on to your mom and me. We’ve been in the same situation since yesterday.
We think you caught it from one of the healthcare professionals who comes by every day.
Your daytime nanny took time off for carnival and hasn’t come back, because she caught the flu too.
The whole city is more or less sick. The rain has arrived, it’s heavy, and it brings with it its share of viruses, watered by strong sun that raises humidity levels and lets these little bugs hatch, kindly shared by people celebrating carnival.
What’s “funny” is that we do everything to keep you away from viruses.
Since you left the hospital in September with your mom, we don’t really go out anymore. No more social life, no more spontaneity. When we go out, it’s for a medical reason or to do the shopping, and when we get back, we apply a protocol even stricter than the most paranoid COVID people.
In reality, we’re living exactly like during the pandemic. And it will be like this for at least another 2 years.
If we had done this from the first month, we might have avoided getting to this point…
To all future parents: stay at home for the first month. Don’t see anyone. Don’t invite anyone. Don’t go anywhere! Even more so if you’re in the middle of virus season. Better a month stuck inside than a lifetime…
Visit from your future physical therapist
We’re still planning a return to our house, and for that your mom has already organized a lot of things.
Your future physical therapist who lives near our house came to visit us to see how things are going here.
It’s nice to see a familiar and reassuring face at home.
It gives us hope for what’s ahead.
A huge thank you to her for her time and for listening to us.
Us
Your mom and I are each continuing our journey with our therapists.
It’s a good decision we made, even if it’s not always easy.
We’re discovering things about ourselves that we sensed without ever really having explored them.
For my part, my therapist managed to help me overcome the trauma of the “gang rape”.
This is my metaphor to describe the repeated and (almost intentional?) negligence of the hospital, even though they were informed but kept repeating the same mistakes over and over again.
Thanks to EMDR, that weight is starting to lift. I relive the scenes without feeling any emotion. As if it were all in black and white in the archives of my mind.
Now I still need to learn to digest the word “chronic” in your condition and the fact that some aftereffects will be there forever…
There, I think there’s still work to do to accept this “rape”…
The association and the future site
With Grandpa Robert, we’re preparing an event for August for the association.
I won’t say more for now, but I’ll have a chance to tell you about it very soon.
On my end, I’m making progress on the site for the bronchiolitis obliterans community.
I have a few details left to work out, but we’re close to a pretty cool V1. I hope this site can help lots of families feel less alone!
That’s all for this post.
I love you, my little potato.
Dad
