Jun 30, 2012

Hajime's Depression

What is happening with Hajime's night nurse?
They are still looking into it, but we haven't heard a thing.
He had just gotten used to the (old) night nurse, so we are very disappointed.
If we are going to have to change to another nurse, I wish they would hurry up and make the arrangements soon.

We just started the day nurse, so there are a lot of things that we need to get used to.  The communication between her and Hajime is still not smooth.  She is a very energetic person, and she is busy with a lot of other things besides Hajime.
She does do what we ask of her, so we've decided to see how it goes until we get used to her.

Recently, Hajime has been feeling more depressed.

One reason for that is that his nurses changed.
He had gotten very used to Darla, but we had to change to a new nurse and he can't communicate with her. It looks like he is getting stressed because he is having difficulty trying to tell her what he wants.
For Hajime, communication is the most important thing, because trust is built on that. Then he is able to feel more comfortable about depending on her.

The other reason for his depression is the high school graduation.
He had to say goodbye to everyone, and it seems that he is still unable to shake off his regret that he couldn't celebrate and have fun with his friends at school.
He is feeling sad because most of his friends are going to faraway colleges.
But it is Mark who has been making up for all that.
He still has one year left of high school, so I'm hoping that Hajime will get a lot stronger this year.  When Mark graduates, Hajime will have no more friends to visit him.  Then he will have a big letdown.  I am very worried about that.

I know visiting someone like Hajime is not easy, but if someone out there can come to see him, please do!

(translated by MS)

Jun 27, 2012

I Hate This Disease

Today was the day for our regular evaluation that we have every three months.
It is to see if we can continue with the palliative care.  I worry a lot each time.
Palliative care is similar to hospice care, so we are not thinking long-term.  But, in Hajime's case, the doctors and Mary are doing their best to make sure his treatment does not become painful. 
Fortunately, there were no problems.  I hope that this palliative care team will continue to come.

Hajime's new stomach medication is almost too effective.  His stool has been watery, so they decided to decrease his dosage.
He was having stomach problems because he couldn't do No. 2, so he had to use suppositories and enemas which he hates. But then he had watery stools because the medication was too strong, so he was just feeling terrible.  I really felt sorry for him.
All this must have been like torture to Hajime because the only thing he can do is shed tears.
This is ALS progressing, so there really is no escape.  It truly is a frightening disease.

Two years have already passed since Hajime developed symptoms of ALS.  The progression has been very fast and now he can only move his eyes.  I feel a deep bitterness towards this disease that suddenly took away the youth of this 19-year-old young man.
Yesterday, I talked with Hajime about the past two years after he got sick.
"We used to talk a lot on the balcony, didn't we?" Now, one year later, we can no longer have a conversation.  Hajime was crying about that.  If only the progression of the disease had been a little slower, we could have done a lot more things...but, of course, there is no use in looking back.
I must look forward!  Recently I am getting more and more depressed.  I don't have any friends that I can confide my sadness to...
But  I've got to cheer up!

(translated by MS)

Jun 25, 2012

Getting much better

It passed one week since Hajime got a stomach problem.
Medications are working and now residual get less so we can start giving feeding as usual. However, medication is working too strong and his BM gets too loose. So now we have to hold the medication.
His G-tube used to be very clean but now it is getting greenish. This color is not so good so we need to get close eye on it.

Last night, I just could not stop thinking about Hajime’s situation and could not stop crying. I was crying next to Hajime.
Just two years ago, we were talking many kind of things together,,,
When does God cure Hajime?
I wish I was a person in a position Hajime is now facing…
While I was crying, Hajime giving me a kind and warm eye to me.
Why to Hajime...

It is very hard for me to thanks for everything even with this circumstance.

(translated by HM)

Jun 23, 2012


We are still holding Hajime’s feeding. Since last night, we start a new medication. This is replacement for the Miralax and seems to work very well and had a lot of BM today. Actually it worked more than we anticipate. Unfortunately we cannot control this well and feel sorry to Hajime.

He still does not feel hungry but demand for a juice. Our nurse says it is ok to give it so we are just giving but this cause to exceed the residual more than 100ml. Hoping that this stomach problem resolve soon.

Today, Japanese pastors have visit Hajime for a prayer. Hajime looks calm and comfortable. I’m so grateful that somebody comes for a prayer for Hajime and for our family. They told Hajime that someday get well and go to the service together...
I wish that kind of day will come true.

I believe in a miracle of God.

(translated by HM)

Jun 21, 2012

Symptom of dehydration

Today, Hajime had a symptom of dehydration and Mary come to see him around 4pm.

Today’s morning he had a residual of more than 100ml so we stopped the feeding again. The residual was kind of dark green. It was similar like when people vomit without anything in their stomach. His urinal is also getting less.

Mary takes a look his blood pressure, pulses, fever and sound of this stomach, and she think he is not dehydrate yet so we were relieved.
However because he has not having BM for a while, she suggested giving Hajime an enema and a suppository. Hajime hate this and he was crying. It seems that this BM problem is one of a common problem of ALS.

As a caregiver, too loose BM is hard on our end but we have to deal with this. Miralex cause to make BM loose but we have to increase dose as well.
We are just hoping that he recover soon and let him able to have a feeding more regularly.

(translated by HM)

Jun 20, 2012

Stomach problem

Past few days, Hajime’s stomach residual is always more than 100ml. Because of this, we have to stop giving nutrition past two days.
Which mean, he hasn’t eaten at all but he doesn’t feel hungry.
Even today’s morning, he had more than 110ml residual so we stopped again. Doctor told us if we have more than 100ml residual, stop giving feeding.

His BM is also not so good. For a past few weeks, it was kind of loose but past two day, is it completely none. Like this time, we have to use a suppository, which Hajime hate. Actually we used today but did not work well.

We have been told that this two problem are related. So, it makes me worry but just need to keep eye on it.
During the bed bath, Hajime complain his stomachache and start to cry.
His pain level was 6 out of 10 so we give a medication.
Mary will call us tomorrow so we will discuss about this issue.

By the way,,,
Our new night nurse slept during her shift and actually she confessed to the agency about this incidence. Now, the agency need to investigate about this incident and during this moment we don’t have any night nurse..
It is very annoying. Now we have to do ourselves at the nighttime again.
According to the agency, they take this kind of problem very seriously. We might have to start over finding new nurse again.
Hope this problem resolve soon.

(translated by HM)

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)

Jun 16, 2012

A Parent's Complicated Feelings

Yesterday was the high school's formal graduation ceremony.
Facebook was filled with graduation pictures.
I was moved by the pictures of everyone tossing their caps.

But, unfortunately, Hajime could not attend the graduation.
He participated in the Baccalaureate on June 10 in place of yesterday's graduation, but personally I wished that he could have gone to the June 14 graduation ceremony.

To be  honest, it's painful for me to look at everyone's Facebook pictures.

The reason we went on the 10th is because the Baccalaureate was going to be held indoors.  The graduation would be outdoors.
Nowadays, it 's very hot outside and that makes it very hard for Hajime.
He let me know that he felt like he didn't have to go at all, but I had mixed feelings and I wondered what he was really thinking.

Last night was the last time that Hajime would be able to see his classmates.
I hope that they will be able to spread their wings and fly and live life to the fullest...in Hajime's place...

(translated by MS)

Jun 15, 2012

Hajime’s caregiver

From this Monday, we will are having a new nurse through Medi-Cal.
We will have during daytime as well as at nighttime so it should be a great help to us.
It probably goanna take a while to get used to for Hajime’s care so we need to spend a lot of time with them. I’m hoping they will prioritize to have a good communication between Hajime.

Speaking about the communications, current nurse Darla put a great effort to have communication with Hajime.
She even played a game for Hajime along with asking how to play it from Hajime. She also access to the YouTube and find the video which Hajime want to watch.

She did a great job. Thank you so much, Darla. 

(translated by HM)

2012 Year Book

Sophia brought a Year book today. She used to be a nighber where we used to live. We moved out to the current place when Hajime posipitalized. 

Sophia is a director of this year’s "Year book" and edited the Hajime’s dedicated page. It turned out to be a really nice Year book.

Hajime, loves Year book every year but since it cost a bit, we did not allow to purchse very year. I could imagin how he would be excied with this year book.

I’m so greatful that Sophia made a such a memorable year book.
Thank you so much, Sophia!

(translated by HM)

Jun 13, 2012


On Sunday, June 10th, there was a ceremony called Baccalaureate at Hajime’s high school.
Hajime borrowed a gown and cap from high school and attend to the ceremony. First, student gather to take a panoramic class photo.

It was very hot day so Hajime seemed to had a hard time because of his gown but he could join to the class photo.

It looks so nice.

After that, all of the student move to the auditorium for the Baccalaureate. Student line up to march in the auditorium. There were performances during the ceremony. One of that was a piano play that dedicated for Hajime. It was a very beautiful sound.

At the end, all move out to the school patio. 

The last moment with their friends at high school... 
They greet each other and take photos…
We got such a nice family photo too.

It was a bit sad since this could be the last moment to see their friends but I hope when they come back to the town, they could stop by to see Hajime.
I hope this was a memorable ceremony for Hajime.

(translated by HM)

Jun 10, 2012

Farewell Party

Yesterday we attended the farewell party at the high school. 
Our friend Michelle invited us to go, so we are truly grateful to her.
Thank you so much, Michelle!

The people at the high school made this beautiful gift for us.  They folded 1000 origami cranes and arranged them to spell out the word, "ai", (love) in Japanese.

Hajime accepted this gift as the cheers of "Hajime! Hajime! Hajime!" echoed in the gym.
It was a very emotional event.  I almost started to cry, but I knew I couldn't be taking group pictures with a teary face, so I tried my best to keep my composure.

This gathering was so different from a Japanese high school.  The energy of the students' voices! 
I know that if Hajime had been able to participate with them, he would have been smiling and screaming himself.  He just loves this sort of thing.

I think Hajime had mixed feelings, but he was glad he was able to go.  It was really good all around.

We are very grateful to all the high school teachers.
Thank you, everyone!

(translated by MS)

Jun 7, 2012

IV is working well

It’s been days since he started an i.v. .
He is doing well.

The color/smell of his secretion is improving and his nose dripping has clearing.
We are hoping his condition to keep improving before he gets checked on after two weeks.

We don’t know at this point whether the catheter will be removed or not, but hoping to leave it in even though we would have to take care of it, as it is a painful process to redo it for Hajime.  We need to pay attention not to get him infected.

Hajime is invited to a morning gathering at his high school. One hundred cranes made by everyone will be given to him. There is only one week left before saying good bye to high school friends. I think it’s important for him to see everyone before that. Hope everything will go smoothly without making Hajime disappointed.

And we have a graduation ceremony next week on the 14th.
We are looking forward to it as Hajime will be attending.
To be honest, I have mixed feelings when I think about how Hajime is feeling.

(Translated by YB)

Jun 6, 2012

Graduation banquet at the church

On Sunday at the church, we attend to the graduation banquet.

Many friends come by to say hi to Hajime.

Usually, we do not want to let Hajime expose to the dinner table but it was important ceremony for Hajime and we have been told that there will be Hajime’s video shown during the ceremony so we decide to attend with our family and Hajime’s grandma.
Unfortunately, due to the time constrain, video did not shown. It was not only for Hajime’s ceremony so I understand but I was a bit upset about it.
I regret myself, because Hajime seemed to have a hard time being there. Hajime actually expressed me that I shouldn’t be there,,,
Nice looking food right in front of him but he couldn’t eat,,, it must be very hard time which we even cannot imagine. I’m so sorry Hajime,,,

(translated by HM)