Hello, son,
Today I’m late. It’s 12:27 PM, this morning was a rush.
Dad is finishing an e-commerce website project for a lady who sells clothes online.
We need to launch the site on Saturday, so it’s a last-minute rush while juggling specialists who visit us all day long.
The last time I wrote to you, I was depressed.
Depression is a bitch. When it gets you, you have to do the opposite of what it tells you.
It tells you to drink. You do an alcohol-free fast for thirty days.
It tells you to sleep and do nothing. You put on your shoes and run up the twenty-one floors of the building via the stairs.
It tells you to eat pizza. Eat your pizza.
That’s what your dad does. I’m far from perfect, haha.
And when your brain is overflowing with crap, go see a therapist and don’t talk about it too much with loved ones, because darkness is contagious and your loved ones don’t deserve that.
I’m trying to think differently so we can get out of this situation. We have leads, we’re exploring them. I really think we’re going to make it.
But we need strength, so we’re holding on…
I was telling your mom yesterday that this life is like managing a new business.
We manage staff, egos, problems with “suppliers” who do their job poorly, etc. etc..
The difference is that with your mom, this isn’t our first business, and we don’t think like employees.
We’re seasoned at all this, even if we each have our own style.
The hardest part now is managing the emotional pain.
And for that, there’s sports, pizza, and sometimes crying does good too.
This morning, after working on the e-commerce site, trying to soothe you, giving you your bath, your medication, having my breakfast discussing doctors with your mom, and running up twenty-one flights of stairs until I was gasping for air to get a glimpse of your respiratory suffering… I came back and there were five people at our home.
Your mom’s efforts are bearing fruit. People are trying to help us. It will take months, but the movement is starting. The train is pulling out of the station; once it’s at full speed, I hope some will feel its impact…
Then there was the gastroenteritis that we obviously paid for out of pocket, because the organization refused.
And then, my son, we got a double whammy.
From the beginning, we’ve been saying that you have reflux and that it affects your breathing.
The doctors scoff at us.
And this little stomach flu comes along, lays out a paper, and explains the whole mechanism in a diagram.
Simplified explanation:
- Obliterative bronchiolitis causes air to remain trapped in the lungs (air trapping).
- The chest and abdomen work much harder to aid breathing and expel air (strong retraction).
- This effort increases pressure on the stomach and facilitates reflux.
- Babies up to two years old already have a higher risk of reflux because their esophageal sphincter is still immature.
- As a bonus, your nasogastric tube keeps the sphincter more open, which worsens reflux.
- When acid comes up and irritates the esophagus, the vagus nerve activates.
- The vagus nerve triggers a laryngobronchial reflex.
- The glottis closes, the bronchi contract, and this causes bronchospasm.
It’s a bit like when a car part starts causing problems; little by little, it causes problems elsewhere, and if you let it go, well, boom!
I just explained it in its own terms, but we’ve been trying to describe this phenomenon to doctors for months, and no one knew about it…
I shed a tear listening to her, and when she left, I broke down.
The solutions now: (for those who might stumble upon this blog via a search one day)
Increase your Esio medication from 3.5 ml in the morning to 7 ml morning and evening.
And if that doesn’t work, unfortunately, consider gastrostomy with anti-reflux surgery.
Gastrostomy (if possible by video) is a small opening in the stomach to place a tube in your belly.
This allows you to be fed without going through the esophagus.
This avoids the nasal tube which opens the sphincter and increases reflux.
In parallel, she says it would be good for you to have anti-reflux surgery (Nissen fundoplication).
It’s an anti-reflux surgery where the upper part of the stomach is wrapped around the lower esophagus to strengthen the sphincter and prevent acid from coming up.
It is often done at the same time as gastrostomy when reflux is very severe, causing apneas, bronchospasms, irritations, when medications are no longer sufficient, and when the child has a chronic lung disease.
What do we think?
Just as we didn’t want a tracheotomy, we wanted to avoid this gastrostomy, because no parent wants to see a button on their child’s belly that leads directly to their stomach.
But we’ll think about it; I believe this operation will help you breathe better and get rid of all the gear you have on your face. And it’s not for life either…. Plus, you already have your share of holes and scars. That’ll make the girls swoon 😉
Now we’re afraid of the conditions under which it would be performed.
The gastroenterologist recommended that we never return to the organization’s hospitals.
It’s “funny” because no doctor, not even those who worked there, considers these places safe.
It’s absurd that this entity still exists.
If there’s karma, some will pay sooner or later, like the miserable cockroaches they are.
The stomach flu also reminded us of the importance of protecting you as much as possible.
No visits from sick individuals.
Every visit requires a mask, gown, and gloves if there’s contact.
A shower is mandatory if leaving the house.
And for external medical appointments, if possible, you should be the first patient seen to avoid infection risks.
Finally, cherry on top, she looked at the last X-ray of your gastric tube that was placed on 09/22 before you left the hospital. According to her, the position is very borderline and could probably have moved since then. So, she would like you to have an X-ray on Saturday to see if we need to change it…
This visit was a relief and also a reminder that the road is still long and steep.
Yesterday we had a genetic test done which was recommended by doctors in France, but also by some when you were still in the hospital
Some think you might have a genetic problem with your immunity, which could have explained this severe infection. And your great-aunt had a heart and lung transplant for primary pulmonary hypertension, even if it seems unlikely to be genetically transmissible.
This test is expensive, and when we asked the insurance for funding, guess what they said?
Anyway, we did it ourselves and will wait for the results in thirty days.
In the meantime, we’ll simply increase your Esio dose to see if it improves the situation, and then we’ll decide whether or not to do this gastrostomy.
Always tubes, more tubes…
Son, I think later you’ll be into music and change the world.
(I’m not sure if the Portuguese and English translation makes sense for this joke.)
I’m off to work
I love you
Dad
PS: I might not write tomorrow, or Saturday, focusing on work.
