Mar 30, 2013

His Teeth Are Wearing Down

About his teeth...last time, the problem was that his teeth were starting to spread apart, but now his teeth are wearing down.

In the doctor's opinion, his teeth may be wearing down because they aren't being used, in the same way that bones become thinner if they're not used.

And, his bite is much more misaligned than before.

We must always keep his bed upright, and since he can't support his head, his teeth gets out of alignment.

They decided to wait and see and keep an eye on these two issues.

Until they find a treatment for ALS, I will always be anxious about what other problems may arise.

We can't do anything about his teeth until he sees a dentist.  And I wonder if there is anything we can do to prevent his teeth from wearing down.
We must remember to keep brushing his teeth to keep his gums strong.
I think we are being very diligent about his oral care but...

Are there any ALS patients with the same symptoms?  

(Translated by MS)

Mar 26, 2013

He Is Stable

Hajime is very stable now.

But his nose is very runny that I almost can't keep up with the suctioning.  At times, it is greenish, but I think it is more often clear.
When I suction the trache,  it is green at the beginning, but later it becomes clear.  That's why I am not too concerned.

The caregiver has improved since the last time, and she is cheerfully communicating with Hajime again.
I can't be too harsh with her because I don't want her to quit on us.  I'm trying to deal with her with the future in mind.   

The sakura are in full bloom in Japan now.
I wish I could let Hajime see them.

(Translated by MS)

Mar 22, 2013

Lauren and Robert

Today, Lauren and Police Officer Robert came to visit.
They really try to encourage Hajime and come often.

Do you all know the movie "Act of Valour"?

Robert recommends this movie because he thinks it's the kind of movie Hajime would like.
He is going to bring the DVD over tomorrow.  We are so excited!

It's good that Hajime lives in this city.  The city officials have been very supportive of Hajime, and they sometimes visit him.

There are times when I get down because of what people say, but I can't tell you how much we have been helped by those who love us from the bottom of their hearts and support us unfailingly.  Thank you so very much.  

(Translated by MS)

Mar 19, 2013

Is It Going to Get Worse from Here On?

Thankfully, Hajime has been stable recently.

Our current caregiver has been getting worse lately.  
At the beginning, she tried very hard to communicate with Hajime, but now it seems like it's a hassle for her to record Hajime's words.  (As you may remember, she has to input each letter of the alphabet one by one as he gives them to her, so it takes a long time).  Now she just says,
"YouTube from 2:00!" and doesn't try to record the words Hajime is indicating to her.  At other times, she doesn't try to ask him what he wants to watch on TV.

We haven't actually seen this happen so we can't say anything to her.  But my husband and I have seen her yawning right in front of Hajime, so we reprimanded her about that.  Her yawning was too much.

And then this happened today.
Hajime cannot move his legs (on his own), so we have to move them at regular intervals.  We lay them down in one direction or another or lay them straight out.
When she had to bend his legs, she used to bend them in a natural position, but please take a look at this photo.

You can see that his legs are completely folded and bent.  This is not the way Hajime wanted his legs to be moved.  It was just her arbitrary decision to do this.

She also did not fold his pillow in half all the way...

I often read Genzo's blog.

Everyone who is involved in his care is amazing.
They not only take complete care of him, they are also completely in tune with his thinking.  
The difference between Hajime's caregiver and the Japanese caregivers is glaring.
I think that Japan is better in this area.
And they're very courteous and thorough.

Our caregiver is now in her third month.  It is going to be a problem if she continues to get worse instead of improve.

(Translated by MS)

Mar 17, 2013

The Pickline Is Removed

Mary came to see Hajime on Thursday.
We had never taken a picture of Mary until now, but today she let me take one.

I feel calm just by looking at Mary's face.
She is truly a vital part of Hajime's care.

This time, we talked about many things and then she removed his pickline and checked a lot of things.

The pickline had been difficult to insert, but taking it out was very fast.

Mary is holding the pickline.  I was amazed at how something this long could have been inside Hajime from his arm to an area near his lungs.

They thought it should be removed as soon as possible because the risk of infection increases the longer you leave it in.   And so they decided to take it out today.

Hajime is thinking about having a new pickline put in,  but they said that it wasn't good to just put in a pickline if he didn't have an infection.
That could actually increase the possibility of an infection.  So they decided that if he came down with an infection and needed an IV later,  they would make an appointment and put the pickline in at that time.

But, to tell you the truth, I am worried.

(Translated by MS)

Mar 15, 2013

Tracy's Questions

Yesterday Tracy (the social worker) came to visit.
It seems that at the team meeting, they talked about how Hajime wanted to give up the other day.  Then they talked about his pickline and decided that they would put off replacing it according to Hajime's wishes.
...which means that if he were to have an infection later, they would not be able to give him antibiotics through the pickline. They would use only antibiotics that they can give him though his G-tube.  Depending on the infection, they may not be able to destroy the bacteria.

I thought they had said before that even if Hajime were to say he wanted to give up, there would be no immediate effect on the course of his medical treatment. This was a huge shock.
But that is something to be decided according to Hajime's wishes, so if Hajime refuses the pickline (replacement), then this is what will happen.

I've heard that people who are ill begin to change in some ways as they approach death.  It seems the body is preparing itself (for the end).  But I don't see that in Hajime.  That's why I think he can hang on for a lot longer.

I had Tracy ask Hajime some hard questions.

1.  What made you say you wanted to give up the other day?  Did you feel something in your body?  Or was it more an emotional thing?

. . . . .  It was my emotions.

2.  Do you think that you are closer to dying?

. . . . .  No, I don't.

     Are you getting weaker?

. . . . .  I don't know.

3.  You may think that you would feel discomfort if the respirator were removed, but when you are given medication, you don't feel discomfort...Knowing that, do you want to remove it?

. . . . .  No, I don't, but I do want to be able to remove it when I want.

4.  Your pickline will be taken out, but do you want a replacement after that?
        (he's already been told about the risks after removal)

. . . . .  I want a pickline put in.

5.  If  your heart has stopped, if you have quietly passed away, or your soul has left, do you want resuscitative measures taken?

. . . . .  Yes, I do.

6.  Do you want to give up now?

. . . . .  No, I don't.  I wanted to tell you what I had been thinking before.

7.  If your illness continues like this, how long can you fight?

. . . . .  I don't know.

8.  If you don't recover from ALS, can you still live at peace?

. . . . .  Yes.

9.  If you get an infection a month from now and you get sick, can you prepare yourself?

. . . . .  No.

I asked him questions like these.  I asked him many other questions but I'm giving you an excerpt.

It seems that Hajime wants to be included in discussing these questions.  Until now, we had been careful not to let him hear when we talked about these things, but I think it is better to include him in these talks from now on.

I was anxious as we asked him these questions, but I was very glad to hear that Hajime does want the pickline put in.

The doctor and Mary will be coming today.
I will talk about many things with them.

(Translated by MS)

Mar 13, 2013

ALS Patients Convention

On Friday night, American time, we were able to "attend"  Japan's ALS Patients Convention via Skype through Dr. Hirai's invitation.

I wondered how Hajime would react.  He was looking at the Skype screen intently until the end.

Mint watched like a good boy with us, too.

The sound quality was not very good,  but I think we were able to have a valuable exchange.

Thank you very much, Dr. Hirai and Dr. Honma.

(translated by MS)

Mar 11, 2013

Thinking about All Kinds of Things

Hajime still feels restless.

I have received many messages in response to my last entry.
There were various opinions, ranging from those of encouragement to those pointing out how my thinking was wrong.
I am grateful to all the people who have written so sincerely to me.
I can look at things from different angles.
It is a good opportunity for me to think about Hajime's situation.
To be honest, there are times, of course, that I get down.
But I think it is important for me to consider his feelings by putting myself in his shoes.

When we think about our son's death, we feel only dread.
I think this is something that only a parent who is caring for a seriously ill child can understand.
Hajime has told us that, no matter what happens, he wants us to put him on life-support.  We have the papers.  That is what he wants, so we continue to cheer him on.

Hajime's feelings are temporary...
This is what our trusted Mary told us.
Everyone will have these feelings at some time...Even people who aren't sick will sometimes have these feelings.  Mary said that is why we need to really listen to Hajime and understand his feelings.
She is absolutely right.

Hajime is still depressed.  But he doesn't tell us in words.  I think it's because he can't get in the mood to do so.  When he is ready to talk,  I will listen to him carefully.

(translated by MS)

Mar 9, 2013

Unthinkable Words

Hajime has been very stable lately.
But I am a little concerned that his secretion is becoming green again and that it is increasing.

Something sad happened today.

The caregiver nurse suddenly couldn't come today, so I spent the day alone with him.  About 10:30, the church pastor, who Hajime had been wanting to see for a long time, came to visit.

Hajime looked so happy.  It was good that he was able to come.

After his visit, Hajime said that he wanted to watch Yamato so he did.  When he was finished,  I asked him what he wanted to watch next.  He said he wanted to watch YouTube on the Xbox.

I started to input Hajime's letters in the search window, as I always do.

Then, the following words appeared.

I want to give up now...

These words made me very sad.
Hajime thinks that there is nothing good about being alive and I cried.
I told Hajime that seeing Mom, Dad, Ryo, and Yuki should make him happy.

I am a Christian so it may be strange for me to say this.  If a son wanted to go to heaven now, is there any parent who could let him?  I tried desperately to change his mind.  That may be the opposite of what he wanted, but I absolutely rejected that.

At the beginning, he was adamant about giving up, but after we talked and cried together many times, he agreed not to give up.

I am pitiful.  It is my fault.  I am the one who made him feel that there is no good in living.
I am trying not to make him feel that way, but it is no use if I am trying alone.  I need to ask Hajime how we can make things more fun for him.

Hajime took some Ativan and calmed down.
Later this afternoon, Mary will visit.
I, too, must calm myself.

(translated by MS)

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)