Suction every 2 hours at night.

He received the Botox treatment at Kaiser.
This time, I guess he received the injections in more places and he said that it hurt very much.
I heard that it takes about 1 to 2 weeks for the effect to show, I’m hoping it works.
But the effect only lasts for three months, so he has to get it again in another 3 months.

We returned to the hospital at around 3 o’clock, afterwards he spent his time comfortably talking with his brother Ryo.

I heard something a little bothersome,,,,,
An ALS patient, whose disease has progressed as far as Hajime, needs suction every 2 hours at night. Currently, Hajime is taking sleep medication because he can’t sleep, if he has to wake up every 2 hours on top of that, it’s a huge problem. His disease might have progressed further than we are thinking.

Realistically, I noticed this because the alarm went off, but the Oxygen level went below 90 in the middle of the night. But Hajime was sound asleep. I rushed to suction it out, but because it was so thick I couldn’t get it out right away. Hajime woke up because he was startled by the suctioning, but to have so much mucus without him even noticing, I thought that’s really dangerous.

It made me realize again that suctioning every 2 hours is really necessary.

Hajime has a tremendous amount of saliva excretions and it just increases.
I’m sure there will be more instances close to suffocation because of this. I really have to be vigilant of this.

The order of mentioning of things has reversed, but I had a talk with Hajime about his anxieties towards this disease.
He said, “Why did I have to get this disease” as he cried.
“How do I communicate with my friends outside?”
And
“My life is boring,,,” He also said that.
He can’t find joy in life,,,he said that as he cried.

What can I tell hajime,,,,
I was only able to tell him, “We’ll get through this together!”
The amount of suffering that he has, there must be so much fear that I can’t even imagine overwhelming him every day.

Watching him cry made me cry again.


Translated by CS