Oct 24, 2012

The Effects of ALS

The doctor came to our house yesterday.

He examined Hajime and said, "This is not a head cold".  If it were a nasal infection and continued for several days as it has for Hajime, the area under his eyes next to his nose would be swollen.  But Hajime is not swollen.

Last Friday, we submitted a sample of his runny nose to the lab.  The results are not out yet, but they said that his blood, mucus, and urine tests were all normal.  That means he does not have an infection.

The doctor then explained why Hajime was having these symptoms.  ALS is progressive, so with his physical functions being destroyed, he comes down with a fever and his nose is constantly runny.  I've never spoken to Dr. Hirai about this so I am a little skeptical, but it will be very difficult if Hajime develops a runny nose in addition to his saliva problem.

I can understand this if there are other ALS patients who have gone through something like this, but I haven't read any blogs that go into enough detail about this.  If there is anyone who knows, please let me know.

We finished filling out the pink CPR form yesterday.

I learned that when the heart stops and resuscitative steps are taken,  there is still only a 5% success rate.  The chances are small even if you've called the ambulance to have them do CPR and they're trying to revive him on the way to the hospital, so they can't bring him back home.  We were told that if he does want to be at home for the end, then maybe it's better not to fill out this pink form.  But Hajime's wish is that they take resuscitative measures no matter what happens, so we were instructed to fill out the form and put it near his bed.

This is one thing we really do not want to have to go through and every time they talk about it,  I feel like my heart is freezing up.  While I think that everything will be OK,  realistically I know there is a chance that his heart will stop, so we need to get various things in order.

For me as a parent and as a fellow human being,  this is a very painful time.

(translated by MS)

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