Good evening, son,
Today I’m writing at the end of the day. It’s been a while since I last did this.
The last two days have been quite busy.
Today, you were scheduled for a brain MRI.
It was finally canceled last night because the anesthesiologist wasn’t available.
The exam has been rescheduled for January 21st….
Yesterday, we had an appointment with your pulmonologist.
She told us you’re progressing quite well. We talked a lot about your coughs when you eat and drink. She thinks it might be an irritation related to you having spent a long time with the tube.
We need to explore, observe, and see how it develops.
It’s still a topic we’re doing a lot of tests on to understand how to prevent you from coughing.
Every time you eat or drink, we keep you still for thirty minutes to limit reflux. When you have reflux, it triggers bronchospasms, and it’s a real struggle.
We also talked about aerosols like Ventolin/Aerolin, salbutamol, which make you scream every time. And that these screams alone also trigger bronchospasms. We’re going to try other medications.
Your mom has made a lot of progress on the possibilities of coming home.
It’s quite encouraging.
We don’t know yet when it will be possible, but we’ve identified solutions to be able to live at home while continuing the care you need.
We still need to evaluate the funding through health insurance.
We know they’ll never fund it.
But we have a strategy in progress.
It takes time.
We’ll see how all this develops.
Regarding them, a healthcare professional hinted to us today that it’s highly probable that the doctor they send to our home (supposed to be a pediatrician but isn’t) receives commissions every time they withdraw care included in the little they give us.
I don’t know if it’s true, and I hope it’s not, but I have to admit that it would fit perfectly into their extreme capitalist logic… Nothing surprises me anymore.
Today, you received the second dose of a vaccine, Pneumo20.
As usual, we went out with all the necessary arrangements. Oxygen, masks, everything else.
Yesterday, I saw a mom’s post on Instagram. Her daughter has had bronchiolitis obliterans for a year and a half.
She said that this disease is stealing her childhood.
That really made me think.
It’s true that, from everything I’ve observed, children with the same illness as you never have a truly normal childhood.
They constantly have to protect themselves from respiratory viruses, limit contact, and be careful about everything.
This also applies to parents’ lives. But at least we got to have a normal childhood.
When I think about that, it really depresses me.
And it rekindles all the hatred I have for the people who, in my opinion, showed negligence and bad faith and who could have prevented this from happening to you.
Like those who told me:
“It’s normal not to wear a mask in the intensive care unit, paizinho, have faith…”
Or those who mistakenly threw new medications in the trash, then picked them up with their bare hands and administered them because they “are expensive”…
But oh well, as always with mental gymnastics, I try to tell myself that maybe we’ll be different.
That we’ll make it.
That we have to believe.
That a miracle can happen.
And that all the efforts we make every day will eventually pay off.
So I believe.
I love you
Dad
