Jun 18, 2012

Resuscitation Measures

Hajime's IV treatment ended last week.
But it seems his infection hasn't completely cleared up yet, and his greenish secretion is still leaving stains on the gauze.  It also smells.
According to the doctor, as long as he doesn't come down with a fever, they won't need to do any IVs and he should be OK.
I will continue to be vigilant.

Last Thursday, the doctor came for a visit.
He is an intern so we are assigned a different doctor every three months. So this day was his last day with us.
Dr. Zacariah has taken very good care of Hajime, so I feel a bit sad.  He visited us many times, and gave us a lot of encouragement.
He is leaving Kaiser for another hospital.
Thank you very much, Dr. Zacariah!

When he came last week, he talked about a very difficult choice we would have to make.
It was regarding resuscitation orders for Hajime.
ALS does not affect the heart muscles, but we have to have a serious talk with Hajime about whether he would want CPR or other resuscitation measures taken in the event that his heart does stop.
And what if his eye muscles weakened to the point that he was in TLS (totally locked-in state)? Would he still want resuscitation measures taken even if that meant enduring a lot of pain?

About that pain...
We heard some unimaginable things from the doctor.  If they did CPR on him,  his ribs may be broken.
If they used electric shock on his heart, he may suffer trauma great enough to cause him to jump and his skin would be damaged too.
Even if they performed resuscitative steps, the probability that he could be revived is only 5%.  
And even if he were resuscitated, he may revert to the same condition as before.  Just listening to this information made me want to cover my ears.  It was extremely painful.

Last night when I was replacing his trache, I talked to Hajime.
I asked him if he wanted resuscitation measures taken, and he answered yes.  Then I told him about what effects there would be on his body if those steps were taken.  Hajime listened to me with wide eyes.
He shed big teardrops, and again he blinked as he responded to our questions.
"Do you want to be resuscitated even if it is very painful?"
We were extremely relieved.  My husband and I grasped Hajime's hands and said to him,
"Let's hang in there together".
Hajime blinked very hard.

It is terrible and painful to have this kind of talk, but in America this documentation is necessary.
We must ask our son who is now over 18 years of age. The doctor brought this up to us at a very good time.

Hajime is young, so the chances of his heart stopping are slim.  We explained that very clearly to him.
I pray to God that nothing like this will happen in the future.

Please, God, protect Hajime....

(translated by MS)


  1. Such difficult, difficult discussions. Things you never ever could imagine having to talk about with your child. You are handling things with such grace - you have my utter and complete respect. Thank you for sharing such deep thoughts and emotions.

    Natasha Prime

  2. Thank you for your comment Natasha.