Aug 30, 2012

He Can't Eat

Hajime had been crying and his face was red.  I asked him if he was in pain, but he said no. I think he was crying about being sick and unable to eat.

Some people from our church have been bringing us dinner on Mondays, Wednesdays, and Fridays. When they bring the food in through the front door, it smells good in the living room.  Hajime's room is right by the front door, so he smells it too.

We eat in the dining room, away from Hajime, so that he can't smell the food as much.

In March of last year,  he had a feeding tube inserted into his stomach.  He has not eaten for a year. He still has his five senses, so of course he can smell.  Nothing is as hard as being unable to eat.  I can't imagine what that would be like. It's just too much for a young 19-year-old like Hajime to not be able to eat.

When I asked him, "Do you want to taste something?" he indicated yes with his blinking. I guess he really wanted it.
I couldn't think of anything that I could let him taste without swallowing it and then be able to suction out right away.
I asked if he wanted some spaghetti sauce we had at home.  But he answered no.
There wasn't anything I could let him taste, so I asked him if he wanted some juice.
He answered that he wanted to take some juice from the feeding tube in his stomach.
I asked him if he wanted me to put it in his mouth, but he said no.
In the end, I gave him some juice and he was satisfied.

He keeps looking at pictures of food on YouTube.  I think he must really want to eat.

Can you imagine how hard this is for him?

(translated by MS)

Aug 28, 2012

The End of Summer Vacation

Last Friday,  Allison, Taylor, and Lia came to visit Hajime.  They had gone on a missions trip to the Philippines.  They shared all kinds of pictures and talked about their trip.

I think that Hajime was happy to see his friends and our church pastor who he hadn't seen in a long time.

Then on Saturday, the following day, his friends from school, Michelle and Sara, came to visit. 

They brought cookies for Hajime.
(I think they did not know that Hajime wouldn't be able to eat them).

They came to see him before college started.  They told him, "We'll be back!"  Such friends are so important.  Hajime was so happy.

As for an update on Hajime's situation, the infections around his trache and (in his) stomach are clearing up well.  But I worry because it seems like something is always stuck in his trache, and the antibiotics just can't get rid of it.  As for his bedsores, I have been putting cream on them and keeping an eye on them, so I think they should be getting better little by little.
But it is very hard for him to move his eyes. In other words, it has gotten very hard to communicate with him.  I am anxious about the future.

(translated by MS)

Aug 25, 2012

Everyone's Support

The other day I talked about my state of mind on Facebook and I received many messages of encouragement and support.

I have been trying not to let my emotions show in front of Hajime and my family, because then everyone would worry.  But as I continue to do that, I have been pushing my feelings down deeper inside my heart and now I feel like I'm just a shell of myself.
But the friends that I have been seeing are precious.  They know how I'm feeling and invite me out.  That's why I can keep going!

I have received many warm messages such as,  "I'm cheering for you",  "We're here for you",  "Let me know if I can help you". It makes me truly happy.
I very rarely leave the house because I'm taking care of Hajime, so I often feel like I am alone.
That's why I start to tear up when I think of all these people who are cheering my family on.

Thank you so much, everyone!

(translated by MS)

Aug 22, 2012

Bedsore again

Hajime did not have a bedsore for a while and doing pretty well but just recently he got bedsores again. It just happen while the air mattress got a hole and waiting for a replacement.

This time he got three places at once. Two were around his hip and one was at his back. I was very shocked. We were pretty cautious for a bedsore so I feel very guilty this happened.

We are now having an interview with new nurses. We are going to meet one more nurse soon and then we will decide a new nurse.  I’m hoping that we will find a good new nurse soon so that we can start training and become able to communicate with Hajime.

We need to make sure Hajime will be turn every 2 hours.  Hope that the nurse is aware of this and make sure to do it.

Anyway, I am so shocked.

(translated by HM)

Aug 20, 2012

Changes in My Family

How our family has been recently...

It's been a year since Hajime could no longer walk.
Now his life is confined to his bed, and the mood and the state of our family are changing little by little.
And, of course, Hajime's brother and sister's reactions toward Hajime are also changing.

My heart aches when I think about these things.
Why is that?

Because although Hajime is in the same house with everyone, the family seems very distant to him.  If he is in the hospital, everyone will come visit him and stand around his bed...but at home,  everyone is not going to be around his bed all the time.
How lonely he must feel...How miserable he must be.

Now, my children never come around their big brother.
When we had a blackout the other day, everyone worried and gathered around Hajime, but usually, they don't even talk to him.  I don't know if it's because they're reassured that he's OK.  Hajime's responses have become so weak that they don't know what to talk about with him.  But Yuki is not thinking that much.  Little brother Ryo is going to start counseling again.
The first topic will be what to talk about with his big brother.

Another factor in all this is that a nurse is always around Hajime.  I think they feel a little shy because she is not a member of the family.
This is especially true for Yuki.

Even if she is a caregiver, it is very difficult to have a stranger in the house. We are a little uncomfortable about that, much more than other people are, so it is hard for us.   But a year has passed since we had to go back and forth to the hospital, so we are fairly used to it now.

These past few days,  Hajime will often spend the whole day doing nothing (not even watch TV).  His eyes are open so he is not sleeping.  I think he just does not feel like doing anything.
He may be giving up on a lot of things.

I take my children out, because it is summer vacation, but I think Hajime really wants to join us.
It seems like he's saying, "I want to go too!"
But, unfortunately, we don't have a wheelchair-accessible van, so the reality is that we can't just say,"OK, let's go!"
I need to think about getting that kind of car.

Ahhhh,  as I think about these things, I get frustrated.  I wonder, "Why can't I do more for him?"

I'm also getting depressed recently.  I can't do anything. I don't feel like doing anything.
I'm making an effort to go out.  I'm picking myself up and trying my best.
I'm just thinking and going around in circles in my head, and I can't even make much conversation with people.
I've become hard of hearing and I'm can't feel as much as before.
I had been trying not to let my family see me feeling sad but then...I just naturally ended up suppressing and hiding all kinds of feelings.
A person's heart is very delicate, isn't it?
I'm not a good mother.  I'm no good...People who are taking care of others might be able to understand my feelings.

Hang in there, Mom!  Hang in there, Hozue!
I'll try my best to get better.

(translated by MS)

Aug 16, 2012

By the by...

A hot day continues. There is a huge temperature difference between outside and inside our house.
We found a rash recently on Hajime’s shoulder. Hajime says it is itchy so I assume it is sweating rash.  His skin is getting very sensitive. Maybe this caused when we had a power outage the other day.
We are trying to keep his room cool so he shouldn’t sweat. Mary will come tomorrow so we will ask for any medications or cream for this.

Anyway, his secretion is not good. There is odor and color is greenish… Right after we finish the antibiotics, this happened. It might be that it did not completely get rid of the infection… We cannot re-start right away so we have to keep eye on it and try to make clean and dry around his trach.

This make me very worry since this might indicate that antibiotics not working. Some kind of bacteria colonized. We also have to be very careful and keep hand washing.

By the by,,, (keep writing same word...)
day time nurse told us that she want to quit. We are soooooo disappointing.
Our mind is occupied with finding a new nurse, start over of training, and start over of communication with Hajime.
Although, this nurse had a problem anyway so maybe this is not that bad thing. Hopefully, next nurse will be more reserved person.

No end of worries...

(translated by HM)

Aug 14, 2012

Beautiful fraternal love

Yesterday, we had a power outage again.
Because our apartment is old or because this area has a problem, we have so often power outage. It directory matter to Hajime’s life, we need to consider widely for the solutions.

Even the power outage happen, the ventilator has an internal battery and we also have an oxygen tank, we could handle without a serious problem if the power outage won’t continue for a long time. The portable suction machine also has a battery so we could handle for a while as well.

This time, the power outage did not continue for a long time however it happened several times. Since we were not sure what is causing this, we decided to turn off the air conditioner and TV until the power become stable. Therefor, Hajime’s room becomes very hot. Hajime cannot tolerate a heat so we fanned Hajime with a hand.

Look at this photo. Fraternal love is beautiful.
They worked very hard for their brother.

Oh, well, but Ryo,,,

(translated by HM)

Aug 13, 2012

Hajime's Favorite DVD

Today, for the first time in quite a while, I watched a DVD of a Macros voice actor concert with Hajime. 

Hajime's grandfather and grandmother in Tajimi sent it to him and he loves it.

But recently, when I ask him, "Do you want to watch it?" he answers, "No".
I hear that Macros is very popular right now.
I heard that one of the actors/singers who performs in this Macros DVD had a show here in Los Angeles the other day.
I asked Hajime, "If there is another show, do you want to go?" and he answered, "Yes!"  So next time, I definitely want to take him.

But I think Hajime is going through a lot of emotions.
Today he watched some TV and then stopped watching and watched again and stopped...
When he is not watching TV, it looks like his face is red from crying.
Right up until he became bedridden, he had been listening to Macros songs and playing with his plastic model toys.
But now, he can't even pick up a model in his hand.
I think he is very frustrated.

For those of you out there who know a lot about anime, please let us know when there is another voice actor show in Los Angeles!  I would love to take him...

(translated by MS)

Aug 11, 2012

Swanson family

Today, Hajime’s very important friends Mark’s family brought a beautiful gift for Hajime. Brian and Emily played music for Hajime.

Swanson children are all so nice and it was a comfort to listen.
I’m sure it heals Hajime’s sprite.
Music is so nice. It can find peace of mind.

Thank you,

(translated by HM)

Aug 8, 2012

Temperature control

It’s been hot. How is everyone doing?

We keep the temperature in the house at 76 degrees at all times, as Hajime can’t take the heat.

However, his room gets hot with a window facing south. The drapes are not open all the way. I wish the A/C worked better in his room.  He often sweats at 76F, so the temperature is kept between 95 – 96F. In addition, we use a fan all day long. It is a must to have. The previous fan went broke in less than a year being overused. I hope this one will last a little longer. I wonder how much longer, being turned on all day long.

Hajime’s infection is getting better. I hope he will heal completely after a one week of drip. Stopping antibiotics makes me nervous about possible infection issues again.

We are keeping up the good health, washing hands and gargling not to catch a cold.

(Translated by YB)

Aug 5, 2012

He Has Gotten Much Better

Hajime's infection has gotten much better.
It looks like the antibiotics are taking effect.
Until only about three days ago, the color and odor of his secretion were not good, but now they are better, so I feel relieved.

The other day I heard news that a candidate for an ALS drug was found, so I posted on my blog and Facebook and I got the impression that each person has a different kind for thought on this news.

There are many ALS patients who are very happy to hear this news.  But there are also patients who would say,  "What? Ten years until it becomes a reality?" Indeed, ten years is a long time.
I want the new drug to be available to everyone right away, but the rest is up to God.

Our friend, Dr. Hirai, is also a part of this research.  It's wonderful, isn't it? I feel happy knowing him!

(translated by MS)

Aug 2, 2012

Great news for ALS

My friend told me big news about progress on ALS research.

"Researchers Take Big Step Toward Cure For ALS"
/ NIKKEI news

Yesterday, we were just happened to talk about Hajime whether “he can really able to cure?” with my husband and Ryo.
Today, I heard this big news. I felt like God was listening us.

This progress may lead to accelerate the research on ALS.
I ran to Hajime and tell about this news. Hajime was responded by blinking his eye.

Today is our 11th wedding anniversary. We are so blessed that we can cerebrate such a day with all together.
This both things made my day and make me cry.

(translated by HM & HM)

Aug 1, 2012

A Few Days Have Passed Since the IV

It has been a few days since he had the IV.  Thankfully, his runny nose has stopped.  But his secretion is still light green and his respirator title volume is in the 400s and that is not very good.  It has been only a few days, so we will watch him for the next two weeks.

As for his stomach, we've been taking measurements in the afternoons. There was over 200 ml left in his stomach, so we stopped his feeding. We are now feeding him twice a day.
Hajime says he is not hungry, so I think it's OK.

His bowel movements are irregular.  Sometimes he has them and sometimes he doesn't, and even when he does, it has been like diarrhea. When he is given antibiotics, there are sometimes side effects with his other functions.  They may be destroying the necessary bacteria in his stomach.  Mary told us all these things.

The thing we must be most careful about is an infection. Figuring out the right amount of medication to treat his symptoms is very difficult.

Lately, I tend to feel depressed, maybe because I haven't been going out.
When I'm at home, I start thinking about all kinds of things.  I remember when Hajime was healthy and start crying.
I'm such a weak person.

(translated by MS)