Mar 4, 2013

Big Plans

He had his weekly checkup last Thursday and Mary came.
The supervising doctor, Dr. Chang, and Dr. Bui also came on that day.
We talked a little about the future.

Hajime went through a lot to have his IV pickline put in, but there is a problem with it now.  Lately it has been getting clogged, and he has had it for over a year, so it looks like they will have to replace it.  The procedure can be done at home, so Mary will do it, but to put one in, a long needle will have to be inserted again.  Hajime's face looked very stiff when he heard that.
And his G-tube is about two years old now, so they may also have to replace that.
He has a Botox appointment in May, so they may do everything all at once at that time.  They will decide after they consult with the infection specialist.
They will also talk to the radiation doctor and they may do another radiation treatment to control his saliva.

I am healthy but just hearing all this talk makes me think it is all so hard.
I did not think it was a good idea for us to have had these discussions in front of Hajime.  We, the parents, and the doctors should have at least talked somewhere away from him.
I pray that everything will go well.

When the doctors came, Hajime's eyes were bright and open wide, but from the time they left until the next day, his eyes were half-closed and his eye movement was sluggish.  I was extremely worried, but since then it looks like he's been trying hard to hold up.  I'm not sure if it's an eye infection or what, but I think it might be better to apply more hot towels over his eyes.

(translated by MS)

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