Oct 31, 2012

They Found the Bacteria

We found the cause of Hajime's infection.
They tested a sample of his runny nose.

In Wikipedia, the name of the bacteria is "Pseudomonas".
It rarely infects healthy people, but it appears in people with a weakened immune system,  people who are weak due to a long hospitalization or surgery, and elderly people who are bedridden.
Sometimes the infection can cause pneumonia.
If someone has an infection from this bacteria,  it is easy to develop a resistance and the treatment becomes extremely difficult.
They say that Hajime will always have this infection.

Two nights ago, we started him on anitbiotics right away.
We had been giving him other antibiotics through his G-tube for a few days before that.  If we were to stop that partway, he could develop a resistance more easily, so we are giving Hajime both antibiotics concurrently.

We've already given him antibiotics several times, but we were unable to completely kill off all the bacteria, so he got another infection.
I am very worried about the future.                                                                                                                                                                  

(translated by MS)

Oct 29, 2012

Taking a Family Picture

Yesterday we went to church to take a family picture.

It's for the church directory.

We hadn't used the wheelchair in a while, but we made it.

We got dressed up for the picture.  We dressed Hajime in one of Dad's shirts and some pants and he looked pretty nice!

First, a picture with me!

Then, a picture in our yard...


And then we arrived at church.

Hajime's nose was very runny, so he had to take pictures with tissue stuffed in his nose, but we took it out for the church picture.

It was the first time in a while that he went out, and his secretion was normal.  It is very important for him to move around like this, so that was good.

Well, we are finally going to Disneyland next Saturday!

(translated by MS)

Oct 26, 2012

I Love NHK!

It has gotten very cold the past few days.
The sun is very strong and it is hot if I don't close Hajime's curtains.  But the wind outside is very cold so I check to see where the sun is no longer hitting and open the windows to let fresh air in.
If the sun were a little less strong, I could open the curtains earlier.
And our windows are old and warped, so it's a struggle to get them open.  It's like I have to pull them as hard as I can and fight and fight and then finally they open.

The past few days, I've been leaving the TV on NHK during the day, and amazingly Hajime has been watching the whole time!
When I asked him before, "Shall I turn on the TV?" he would say no, but now he's saying he'll watch NHK.  I'm surprised.
So Hajime is watching TV all day.
It makes me happy.
He is watching everything...from the Wide Show to the news to cooking shows.
I am so grateful to NHK.  Thank yoouuu!

This is the same Hajime who didn't want to do anything every day.  It's a good sign!

(translated by MS)

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)

Oct 22, 2012

I Was Energized

Today was a beautiful day.  For the first time, we opened the window in Hajime's room with just the screen.  We opened the back door too and let the breeze in.  The breeze felt wonderful, and Hajime's face looked like he was saying,  "Ahhh, that really feels good!"

We had not opened his window before because a lot of ants would come in every time we opened it.  Also,  it was often hot, so we kept the curtains closed and just controlled the room temperature with the air conditioner.  But today the air from outside was actually cooler...so that was our first time!  It was perfect.

Hajime was able to feel like he was outdoors while still lying in bed, so I'd like to open the window again for him on days when there is a good breeze.

On such a beautiful day, something even more wonderful awaited us!
Our friends, husband and wife, Taka and Mai, came to visit.

They are dear friends who truly want to support Hajime.  They want everyone to know about Hajime, and so they've told all the people they know about him.  They want Hajime to regain his spirits, and I have been uplifted and encouraged too.

They told him, "Hajime, you are really hanging in there.  Hajime, you're doing great!"  and Hajime looked very happy.
These words can start to lift his spirits.
We received a gift more precious than anything else.

I, too, had been depressed lately, but thanks to our friends,  I felt energized and encouraged.  I was able to feel a great calmness and healing with them and a warm feeling filled our house.

There will be many things in the future, but I hope that we can continue to be friends.  It makes me happy to think that there are people who really understand what we are going through.  They told us that their parents are also cheering Hajime on from Japan.  What a love-filled family!  I am thankful that we were able to meet them.

Thank you very much for coming today, Taka and Mai!

(translated by MS)

Oct 19, 2012

The Male Nurse

The Male Nurse

We let go of the male day nurse yesterday.  I think he lasted about a month?

This nurse was not able to separate his work from his personal business.  He was supposed to be coming to take care of Hajime, but he didn't much.  He would sit on the sofa next to me in the living room and get carried away with watching TV and talking.  He would take Hajime's only pleasure in life, his soda, saying, "I have a headache.  Can I have some?" and then drink two cans.  If he sat down next to Hajime, he wouldn't talk to him; he would watch what I was doing.  It did not seem at all that he was coming to do any work.

With regard to his work,  he would make mistakes with his medications too.  (Hajime has a schedule of what weeks he is supposed to take his antibiotics and when not to, but the nurse would give him the medicine in an off week). Even when these things happened, he would always lie in response to my husband's questions.

It was terrible when he changed Hajime's diapers.  He was supposed to wipe him up, but he would get it on the bedsheets.  It seemed he did not have much experience with diaper-changing.  Diaper-changing is an important part of Hajime's care, so we always ask about it in interviews.

Washing hands is also important, but he was too much.  He would go wash his hands every three minutes, use a lot of handsoap, and leave a mountain of paper towels.  Even if he used gloves to handle Hajime,  he would go wash his hands after each step.

At the beginning,  when he arrived in the morning, he would start taking Hajime's vitals without washing his hands.  Since he was coming in from the outside, it was required that he wash his hands.  Then when the person from the agency talked to him about it and he still didn't wash his hands, my husband warned him directly.
After that, this three-minute interval handwashing began.

He is supposed to be a professional, so it really makes me wonder why he can't do home care properly.  And the fact that he would lie about making a mistake giving Hajime his medication makes me doubt him as an individual. I also had a problem with his inability to set male/female boundaries.

So, starting today, my daytime nursing begins again, but when I think about the stress I've had, I can feel more relaxed at home now.  I will do my best until we find a new nurse.

(translated by MS)

Oct 17, 2012

He Still Has an Infection

Lauren and her Japanese friend Maki came to visit Hajime on Monday.

We met Maki for the first time.  She had heard a lot about Hajime from Lauren (and she has been reading my blog).  They told me to let them know if there was anything they could do to help.
I am so grateful for that.

Hajime's condition is unstable with his fever going up and down.
His nose is very runny and there is a lot of secretion.
We had been doing his trache suctioning about twice a day, but now we are doing it as many as ten times a day.
I think all of this has to do with the infection.

They checked his phlegm on Monday.  It will take a few days until we find out the results.  They will try to identify the type of infection he has and then have him take the antibiotics to target the bacteria.

He's had a slight fever for quite awhile, so I worry that his body has gotten used to the fever.   He had a fever of 100.6 degrees tonight so I gave him Tylenol.
For some reason, Hajime resists being given this medicine.
Even though it's hard for him to have the fever, it seems like he doesn't want to take medicine for it.

After the nurse goes home at 6:00,  we talk a lot,  but it seems like he can sense my agitation because he watches me carefully and looks at me worriedly.  My eyes are filled with tears.
Come on, Mom, be strong!

I guess Hajime can "see" everything.

(translated by MS)

Oct 14, 2012

Feeling All Alone

Hajime still has an infection.  We haven't started him on antibiotics yet.  He sometimes gets better and then he gets worse.
I think he's probably trying to fight it with his own immune system.

On Friday he had a blood test.  (He has a pickline so it would've been good if they could have drawn his blood through the pickline.  But last time they couldn't do it and this time they couldn't either, so they did the test with a hypodermic needle). Maybe the results weren't good, but they're also going to have to check his phlegm.  Depending on the results, he may have to take antibiotics.

His fever is down, but he still has a runny nose.

Today he stared at the ceiling all day and didn't watch any TV.

Hajime seemed really lonely because we eat our meals in the dining room and he can hear the children's laughter.  I wish we could bring his bed over to the dining room and then he could join in our conversation, but we don't want to be eating in front of him.

It's times like these that I feel so badly for him.
It's also hard that the living room is right next to his bed and close enough for him to see, but it's a little too far to hear what's going on.
We're in the same house, and yet he feels so far away from us.  I have to do something about that.  But it is hard.

I feel like I'm making excuses.  I should think more about Hajime's feelings and do more for him.

(translated by MS)

Oct 12, 2012

Interaction with the Outside

I'm sorry about the fuss I created with a previous entry.
There were different opinions, and I myself wonder if my thinking is correct.
So now I'm a little hesitant about writing this blog.

Since that time, Hajime has had a fever off and on.  He also has a runny nose off and on.   Mary is coming today so I will ask her a lot of questions.

During the day, Hajime is often staring blankly at the ceiling.

I wonder what he is thinking about.
The day nurse doesn't ask him too many questions, so he is looking at the ceiling more.

He has gotten tired of watching TV too.  What should we do for him?
I think talking to people and going out might be good.

He doesn't have to physically go outside, but he could meet visitors and talk to people using the computer.
The best thing is to be constantly connected to people that way, even if he is in bed.
Unfortunately, he still doesn't feel like using the computer.  It seems his eyes get very tired.  But something like Skype might be good.

I'd like for him to try different things.

(translated by MS)

Oct 10, 2012

Fall into a pitfall

We had a great fun time on Sunday. I hope Hajime enjoyed too.
It is always nice to have visitor and cheer him up. Sometime, far friends come more often than people live close.

On Monday night, Hajime was crying with tears. I asked him, what is a matter? Do you have any pain? But he said no. Hajime was frustrating about not able to go out with friends and talk with them. He was wishing to speak again. He was struggling about his current situations. I did not know what to tell him.

It was right after I saw the news about Dr. Yamanaka’s Nobel Prize for iPS research so I told Hajime about this news. This iPS research is rapidly progressing. There was news that medications of ALS candidate have been found utilizing this iPS. I told Hajime that it should come a day that you can speak again. So let’s work out together till then. I know you are already having a lot every day so you don’t have to try hard anymore. Just be with us and get over day by day.

He just wanted to chat with his friends. Just an ordinary wishes for 19 years old boy.
I wish all the best to the Japanese research team to make this wish real. I hope people will be more aware about this disease.

Yesterday, I just come up with an idea of having a charity for Hajime. I asked to my friends for help. We are having hard time paying for all of his medical needs. Many friends replied with yes but at the same time, I learned my mistake pointed out from my friend.
I could write a blog or share a story about Hajime on Facebook but I realized that I don’t have much enthusiasm to run a big project. I take care Hajime, take care other kids and do some housework daily… Actually that is all I can do and I don’t have much energy left to do more.

I am depression. I have a lot of negative feeling. I wish I could pour more love to Hajime,,  I wish I could share more about ALS so that people know more about ALS but I can’t do those things.
My son’s symptom is getting worse daily. He has an infection problem on top. But I can’t do anything for him. I get upset about myself. I don’t know what I want to do.

There was one big reason I did want to carry on an event for Hajime. I wanted to give a hope to my son. He feels alone.  I wanted to know him in the way he can see; we are all together. That is why I wanted to hold the event.

But it is difficult. It does not work only by my thought.  I have very nice friends. I just had a phone call and worry me. I will think what I can do for Hajime with my friends.

Thank you so much for reading my blog. I’m receiving a lot of encouragement.
That is how I can smile in front of Hajime.
Please support our family.
I believe we can find a best way.

(translated by HM)

Oct 8, 2012

We Couldn't Stop Laughing

My friends from Torrance came to visit today.
They have always supported Hajime, but it was actually their first time meeting him.  Still, we were all able to feel comfortable and relaxed. Thank you!

When Hajime has difficulty responding, he looks up and sideways and indicates, "I dunno...", but he normally doesn't do that around other people.
But today, he did it with my friends.
We couldn't stop laughing, and I think Hajime was happy too.

Thank you, Hami-chan, Eri-chan, Satopi!

Hajime did not have a fever last night, but he did again tonight.  His nose is very runny and I feel so badly for him.  But it's good Hajime seemed really happy today.  I hope he completely recovers by the time we go to Disneyland.

Hang in there, Hajime!

(translated by MS)

Oct 6, 2012

On Hajime's Shoulders

I don't know what's wrong with me lately, but I start to cry just by looking at Hajime's face.  (I think my husband is the same...)
Hajime is really fighting. It is so painful to watch.

The past few days, after the nurse goes home, I've been putting my face next to Hajime's and crying.  But I can't share my feelings with anyone.  I would like someone to just listen to me, but it's very hard.

The only thing that Hajime can do is watch TV...
When I ask him, "Is it fun watching TV?" he answers no.
I wonder what is fun...I don't think he wants to use the computer.

We are making plans to go to Disneyland this month or next month.
If anyone can join us, please come with him.
It would make me happy if Hajime got excited about just getting in to Disneyland.

But we have to get rid of his infection first!

Up close, Hajime looks good.
But, the truth is, he is in a very difficult situation.

The most important thing now is his battle against the infection.

The use of antibiotics in pain management.  That is a very difficult problem.
The infection has not cleared up yet...which makes me wonder if he has already built up a resistance.
He came down with this current fever just two days after he finished his antibiotics.
He still gets a fever at night and he has had a light green runny nose since yesterday.
I think it's a cold, but I worry.

I hear that the reason for the high death rate among ALS patients is infections.
Because of Hajime's current resistance level,  we've been told to watch if his fever goes above 99 degrees F (37.22 C).  We must also watch for infections of his bedsores.

I am feeling very anxious about what to do for his current infection.

(translated by MS)

Oct 2, 2012

Nighttime Fever

Hajime's fever did go down, but these past few days, he has had a low-grade fever only at night.

I think his secretion does not smell very good either.  I wonder if he has an infection because it is also a light green color, but I don't know if it's a good idea to give him antibiotics.

There is a lot of discharge from his eyes, so sometimes he can't open his eyes very well.  He's using a medication called Zanitor for allergies.  I wonder if he has a cold?

He must not feel too good because he sleeps a lot during the day.
Seeing him like this makes me wonder if it might be better to give him medicine.
When he is in pain, he feels depressed and less able to fight the disease.

There are some people who have not said it to me but I get the feeling that they can't help Hajime or our family much anymore.
I understand that everyone has different things to deal with, but I still feel sad.

When I start thinking about all these things, I start to cry at how pathetic I am.

(translated by MS)