We had something to consider...

Today, Hajime felt asleep after shower in the morning, PT was fixed to
the afternoon.

After the noon, we had a session exchanging his tracheotomy tube. It
was a while since last time, he was bleeding a bit a lot. Last time,
we did not really mind it when we saw the exchange, but this time was
different. If we change it frequently, the amount is less, we heard.
Hajime must be afraid a lot, too. This hospital usually exchange it
once a week. But the size of tube he puts is 8, though the stock of
the hospital is either 6 or 7. This hospital is for children, they
have smaller size. Therefore, they needed to order the tube, so it
took a while. Anyway, it was good to exchange. Next time, we have to
do it. When we think about it, we feel very nervous. If we can do? It
makes us worry.

After the exchange, he had the physical therapy, so Hajime must have
been very nervous, I thought. But he did very good, without complaint.
It is very great, I think. As usual, he went out sitting on the
wheelchair. It seems he is so happy going outside. And he said he
wants to go to the cafeteria. The place is the one we always taking
meal, and nothing special, though. And we came back to his room.

Recently it is our job to let him sit on the wheelchair. It is harder
than we thought. Hajime is very light now, so it must be fine, we
thought. But in the reality, it is very different, we feel everyday.
Well, we will get used to it anyway.

And today, we had something to consider very much. We had a talk with
the doctor talking about the Hajime's future. He talked what no one
talked or could not talk, very considerably. It was "if Hajime's got
something, do family wants him to be at home or at a hospital." When
we got the question we have never thought about, we had to consider a
lot. But I want him to live longer, and have treatment for it, thus
it would be better for him to stay at a hospital, maybe. The doctor
said we do not feel guilty as parents that we cannot let him stay at
home, though there are some parents never let their children go to a
hospital but stay at home. It was something we have never thought of.
But we have to consider that, we thought.

It was very good time to get a trigger to start considering.

If you are a parent having a child the same like Hajime, what would you do?


Translated by Satoko Okamoto