Hajime wasn’t doing well from morning again.
During the day, it seemed like it was too hot, so much so that he sweat a lot.
He spent the day with ice packs on his forehead and under the arm.
It maybe because of the slight infection that he has, he didn’t stabilize throughout the day.
In the early morn, he had problems with his breathing and we couldn’t settle down for awhile.
I told this to the doctor and the doctor discussed about it with the ICU doctor.
As a result, Hajime has to have the ventilator 24hours a day from now on, forever.
There were times that he was able to take the ventilator off during the day and night but there are good days and bad days.
Looking at the whole picture there’s a high risk of breathing complications and thinking about it from the safety point,
it is necessary to have it on 24 hours….
That is what they decided on.
Hearing about this from the doctor, Hajime was crying.
Huge tears were falling down his cheeks…
We, the parents were shocked too.
Before he was hospitalized, he walked into the hospital himself and he breathed on his own.
It made me realize once again how far this disease had progressed in one month.
I think that the day to leave the hospital is soon, but because of this decision(about the ventilator) our family’s life will change drastically.
I’m happy that he can leave the hospital but the disease doesn’t know where to stop its progress.
It is too difficult to take this reality in.
I want to make Hajime feel better. This reality is just too hard so I think that it’s important right now
to encourage him to look forward to going home early to see his brother and sister.
Translated by Christine Shirota