Hello my son,
It’s 2:39 AM.
And tonight it’s your mom and me watching over you.
Usually, your mom starts the night with you. She does your NIV if she’s still standing after the day.
Then she goes to sleep in the room next to yours. The camera is on. The sound is turned all the way up. The oxygen monitor stays connected to track your saturation constantly.
Your mom holds on until 2 AM. Then I take over.
While one of us watches over you, the other tries to actually rest in our bedroom.
Then when we’re watching you, we try to sleep but it’s not easy because we stay on constant alert.
Lately, you officially wake up at 4 AM.
That’s when the day begins:
- Medications.
- Feeding.
- Bath.
- Nebulizer.
Usually, you fall back asleep around 6:30 AM.
And at 8 AM, your first physical therapist arrives to start your long day with all the healthcare professionals!
Yesterday, your mom had an appointment at the Albert Sabin Children’s Hospital with pulmonologists
I’m going to try to summarize the audio summary your mom sent me on WhatsApp. I might make mistakes because Portuguese > AI > Summary… the quality isn’t guaranteed.
This is the public hospital here. It’s not easy to get in. The waiting lists are long. But your mom fought hard. She managed to get you followed there because you’re one of the rare cases.
You’re a rare Pokémon, so they’re happy to have you in their Pokédex!
There, they have the best specialists. They see the most complex cases in the country. And you, my son, are one of those they’re watching closely.
Several experienced pulmonologists examined your case.
No other serious problems were detected besides your bronchiolitis obliterans.
They also use the term “bronchopulmonary dysplasia of prematurity” mainly to make your follow-up easier.
The real issue is respiratory and immune fragility. Your lungs get inflamed more easily than other children’s.
Some children recover quickly. Others progress more gradually.
The plan is clear:
- Avoid new infections for at least 2 years. That means strict protocol like we’re already doing,
- Stabilize lung inflammation,
- Boost your respiratory immunity,
- Help you gain weight because it’s beneficial for your lung development,
- Hospitals are to be avoided as much as possible to limit infection risks. We only go if necessary.
The treatments added to what you already have:
- Montelair for inflammation.
- Flimucil to thin secretions.
- Broncho-Vaxom to support your respiratory immunity.
You’ll also get the Beyforte vaccine for free this year (hooray!) to protect you against bronchiolitis again.
It’s a stabilization strategy.
Weight gain is considered essential. The more you grow/gain weight, the stronger your lungs become.
If we weren’t in the middle of a season full of viruses, you would most likely have been scheduled for a gastrostomy tube placement, but right now it’s too dangerous to take you to the hospital.
A nasal feeding tube was discussed, with it being put in at home. Then it was advised against, because you could pull it out and that could land us in the hospital.
So we’re going to wait a few months…
Also watch out for excessive fats that we’re recommended to add to your food to help you gain weight. Too much fat can cause reflux. And reflux can irritate your lungs. It’s all so simple!
New appointment scheduled in about 2 months with you in person this time.
They confirmed that returning home is possible if we have everything we need (not yet guaranteed with our insurance…)
Speaking of home, yesterday your uncle Rafael came. A big thank you to him. He’s making improvements to fight humidity during this rainy season. We’re trying to sanitize the walls, protect the air, and prepare the space.
Because we hope to be able to go home soon.
On March 23, it will be one year since we left our home to welcome you into this world. One year away from home… and not just a year of happiness…
When I hear the problems of “normal” parents, I feel like I’m listening to comedy sketches. It always makes me laugh. I hope one day we’ll have the same ones.
That’s the latest news.
In summary, for two years, we’re doing everything to protect you and we’re praying that the big boss of the universe, whatever his name is, hears us once again, and that all of this gets better.
#genkidama
I love you, my little potato
Dad.
