Nov 30, 2011

Thank you for being patient

Hajime is doing very well.
I am the one who is not feeling well.
It's been a bit tough as I have a fever and body ache.

I am sorry for the delay in updating my blog.
Please be patient a little longer.

My in-laws are coming today from Japan.
I am really looking forward to it.

(Translated by Yoko B.)

Nov 26, 2011

Thanksgiving Day

My PC has stopped working completely.
I need to save at least the data on the hard disc as I don't have any backed up data.

Today is a Thanksgiving day in America.
My husband is off today and we are all here together with Hajime.
It is the happiest thing.
Hajime taught us that happiness like this is right by you.

We received a lot of Thanksgiving food from everyone today.
It was so great.
Thank you so much everybody.

We had a nurse from pallative care yesterday and Hajime was telling that something wrong with his mouth.
We take care of his mouth in the morning and at night, but his mouth is becoming hard to open.
His pillow needs to be adjusted, but is has been difficult to clean his tongue. Looks like an infection on his tongue may be the cause. Hope it will not get any worse as it could be very dangerous for Hajime.

Also, we changed the nutrition volume that Stella instructed us from 375ml X 5 times + 240ml water to 5 cans per day. However, it may be too much of a change and we decided on 6.5 cans a day.
No more feeding at night.
But, his toilet needs at night has not changed.
What is most important is Hajime's well being, so we will adjust accordingly.

(Translated by Yoko B.)

Nov 23, 2011

God with Hajime

The condition of PC has not been very good,
and it has repeated getting crashed again and again for several days.
It hasn't recovered completely yet, but we are letting it run
at the safe mode.

Last Thursday when we visitied high school,
we took some photos together.
We found a very interesting photo among them.
You can see a sunlight there
and the sunlight is shining Hajime.

Alice, Mark's mother told me.
When I see closely, it is clear that the sunlight
is falling on where Hajime is.
It's such a nice photo and it moved me a lot.

"Hajime is with God"
This word still impresses me.

Hajime has been calm all the time.
As for the infection, it seems the medicine is working.
Both the smell and the color seem okay.
Hajime looks somewhat fine.
But these days, he has often had toilet accidents.
I guess he has to use diaper before long.
It must be shocking for an 18-year-old boy,
but my husband and I think it's better for him
because he doesn't have to worry about incontinence.

The muscle hasn't stopped declining,
and it is getting unable to move gradually.
When I change sheets,
I could do it with Hajime's help,
but recently we cannot do it anymore.

From now on, it's up to our stamina.
There are some things I cannot do all by myself,
and in those times,
I feel guilty as a mother.
Though I am his mother, what am I saying?
I have to hang in there more!!

Translated by YT

Nov 18, 2011

Welcomed at High School

A lot has happened on Thursday.

There was an incident this morning.
After giving his morning medicine, Hajime's face turned white.
I noticed while I was applying Vaseline on his lips, he looked light-headed.
I called my husband right away and checked Hajime's blood pressure which was 83/57 no matter how many times we checked. We called the nurse and she asked us to raise his body gradually.
We raised Hajime's body while we prepared for a school bus to his high school.

That’s right. He went to his high school today.
Hajimes friend, Kevyn planned everything.

A city bus was arranged by Joan and came by at 11 am.

It was quite challenging to move Hajime to his wheel chair as he hasn't used it since he came home.
His legs were no longer able to stand. I realized it was so much tougher without him being able to stand..

It took us a while to put Hajime in his wheel chair and onto a bus to go to his school.

At school Hajime's friends were waiting for him.

I was so moved and brought tears in my eyes.
Hajime is loved by so many people.

We came home around 11:20 am after spending three hours or so at school.
He seemed to have enjoyed very much.

Later his condition got worsened. We had to use tulake many times in addition to cough assist to make him feel better.

After that, we had a Social worker and a nurse from the palliative care team for a long visit.

It was pretty hectic, but such a memorable and wonderful day.

Thank you god.

Nov 16, 2011

Younger brother's birthday

Today, the 15th of November is Hajime's younger brother's birthday!
First thing Hajime did this morning was to type “A Happy Birthday”
to his brother with his tobil.

Celebrating his birthday together as a family was really nice. My husband's birthday was spent at an intensive care and we weren't able to anything to celebrate.

However, Hajime was sad not being able to join us for dinner or to eat the birthday cake with us. It is hard that he can't eat.

We had a helper from Keiser for giving Hajime bed bath. Normally, she does it by herself, but she asked me to stay today. My husband helps out at night, but he was very exhausted as he hardly got any sleep. It is not easy to operate the equipment to clear his secretions every several minutes. I am wondering if we should ask the helper to handle the night time.

Heavy secretions is a serious issue and I am concerned for his condition in the future.

(Translated by Yoko B.)

Nov 14, 2011

In his bed

The kids have been out of school since last Friday. Hajime is happy that he can play games with them and talk to them.

His conditions,

We stopped the stomach medicine as he has been having loose stools lately.
Looks like he has some kind of infection that makes his secretions not looking very good.
He is prescribed an antibiotics to take for the next seven days.

I am a little concerned as he is not very energetic.
I hope to see his smile soon.

We also did our first tulake replacement since he came home from the hospital.
Hajime was not really up to it, as he can see his blood and it is not easy.

After that, Mark came and it made Hajime feel much better.

Sometimes, we have no visitors all day and on some days visitors coming in non-stop.
Hajime is loved by so many people.
I really appreciate them.

Lately, Hajime is very scared of going to sleep at night as he thinks he may never wake up.
It really hurts me every time he tells me what is going on his mind.

I also tried to lie down in Hajime's bed today(reckless right?).
I actually felt so relaxed.
What I noticed was the smell and the noise.
The smell is rather strong as Hajime has an infection.
I realized he is lying down in this smell the whole time.
He does not seem to be bothered by the smell so much, though.
And the sound of the equipment like a breathing device.
It would be nice to rest without all the noise.

It would be wonderful if he could live a normal life.

I am encouraged so much by watching Hajime working very hard every day.

(Translated by Yoko B.)

Nov 9, 2011

In a panic

Hajime's fever finally went down and we had a relaxing day today.

Since I'm taking care of him all alone in the day time,
everything doesn't go smoothly as I wish.
I had many things to do at the same time and got in a kind of panic.

Exchanging sheets, bed bath(wiping his body with towel on the bed),
raising him up and inhalation, chuleck care, feeding,
breezing treatment, and so on...
and giving him medicine...

Compared to night time, there are many things to do in the day time.
I really need vitality!

But it seems Hajime feels most relieved when his mother cares everything.
I think I have to do my best.

Today, my best friend Noriko came to visit us.
As I cannot go out, my friend visits us like this, which is really important.
I was so happy!
Noriko always care about us family,
and also she worries about me and encourages me.
Such a big help from my friends truly support me a lot.
I really appreciate it. Thank you, Noriko!

In the afternoon, Allison and Tailor came to visit Hajime.
Tailor and Hajime were enjoying playing games together.
Until recently, even when his friends came, Hajime couldn't talk with them
and communication was impossible,
but now, he can communicate with his friends with the game;
which means, many children play games for this reason.
Hajime looked so happy.
Allison and Tailor, thank you for coming!

It's really nice to have many visitors.

Translated by Yuki Taterin

Nov 8, 2011

Hajime seemed not well today…

Hajime looked fine in the morning, but was not in a good condition for the rest of the day.

He slept several times during the daytime. He appeared to run the fever which went up to 100.3°F (37.9°C) by evening. Soft stool and he seemed to have the stomach flu… When he feels sick, he became bearish and starts thinking about his disease more seriously… I don’t know how much he blames himself when he can do nothing but just lie down on the bed… He tries to not bother us and not worry us… I pity him very much… He could have stopped blaming himself if Nurse is here…

BTW, the back-up unit of the ventilator does not work well. It seems the model is going to be changed back from “1150” to “950”. The one we have at home is “950”, which is the older model. Even though “1150” is the latest, the internal battery does not work well. Since the back-up unit is quit important and must work properly whenever we use, I really want to make sure that we would get the right and defect-free unit.

Sure thing, the home-care is very hard.

Translated by RM and YM

Nov 6, 2011

Hajime is doing fine!

Because I cannot always stay with PC, it is difficult to update the blog everyday and as much as I hope. It is easier to do that on the mobile phone though...

Even though Hajime’s condition is fine, I am still worried about secretion getting discolored (to yellow) and giving stench.

On Thursday morning, Kaiser sent the doctor and the nurse to check him up. Due to a large amount of secretion, they recommended to use the patch, which is the same one we previously used. We decided to make a try and put it not only behind the ear but also in the upper body.

Around 3pm, the social worker came and helped us with the Medi-Cal application/ paper work.

We were lucky and passed the state-program (In-Home Operation). We hope to go through the Medi-Cal application too. I went to the post office and mailed on Saturday.

Allison (from the church) and Nicole came to see us with the “Welcome Home!” poster. Although it is too big to put on the wall where Hajime can see, he was very pleased.
I thank you all very much!

Then, Steve brought a picture and gave an explanation. Next day, on Friday, Mark came to see Hajime. Hajime is very pleased to see many friends almost everyday.

I would like to see his friends keep visiting us as seeing friends becomes the Hajime’s energy source and encourages him a lot.

Translated by RM and YM

Nov 3, 2011

How precious friends are

Today, Tammy came to see us for assistance.

We can rely on her very much as she gets used to the things around here, such as giving medicine and helping with aspiration.

Hajime looked tired somewhat today, as he couldn’t sleep well last night. Since he had been in hospital life for 5 months, it may take some time to accommodate himself to living at home. Nevertheless, he became energized as his younger brother, Ryo, would come back home at 3pm and his friends would come to play the game together this evening. I did realize that friends were so precious.

We received the air mattress, arranged by the nurse in Palliative-Care. I wondered how to set it up in the Hajime’s bed but would rather wait for the nurse comes back tomorrow.

I am going to ask the doctor & the nurse various things when they visit us tomorrow.

Translated by RM and YM

Nov 2, 2011

The morning we spend together that we long waited

Yesterday, time flew like an arrow.
I'm so happy to be able to see Hajime immediatelyラブラブ

Besides, it's really important you don't have to go
to Orange County taking a whole hour,
especially for me, who has other school-children.
 I don't have to do my children's assignment at the hospital.
His brother and sister also can see Hajime's face
as soon as they are back from school.

Hajime stays home; it means,
we are really close to each other in our daily life.

BTW, yesterday, November first, was so busy as well!!
Nurse came just before 10 o'clock in the morning,
and she helped me to give medicine to him,
and she gave a hand to many things.

Hajime is not so good, maybe because he's tired
from this and that just after he got out of hospital.
I'm worried about him if he is okay,
but it makes me feel better
to find him sleeping in the daytime.
To see him sleeping with a face like an angel,
I was kind of relieved.

RT came again today to give an explanation.
He was supposed to come from 4 to 4:30,
but he showed up after 5 eventually.
And his speech was really long.
Not only Hajime but all of us got exhausted.

It's really tough to give a care for 24 hours a day, 7 days a week.
I'm feeling it from the bottom of the heart.
Not only taking care of my children and housework,
my husband's work and many other things,
but I have to care Hajime all by myself.
I'm really anxious if I can really do this.

But Hajime said to me, "I'm sorry".
He thinks it's his fault to give a big burden to me.
He looked so ssad.
We are always trying to care him without showing we're tired,
but Hajime knows many things.
Nothing is sadder than this.
I wish I can express those feeling.

I'm worried about Hajime's heart.

Translated by YT

The long-awaited day, Discharge from hospital

Finally, I got a time to sit at my desk and update the blog on PC.

Although I wanted to update the diary/ the blog of the day Hajime was discharged from hospital right away, I had no time at all and made myself really busy by working up until 2am. Now I got relieved as my husband does in turns.

Well, let me get started by telling you about the day Hajime left hospital.

On 31st, I went ahead to the hospital right after I dropped off my kids at the school in the morning. By the time I arrived, Hajime already took a shower and cleaned up to make him ready for leave.

Then, he said good-bye to nurses and therapists, which is the sad thing to do. Among others, leaving from Pamela is very sad. She came to see Hajime in the morning, even though she worked all thought the night before. We are so happy to see her. She always took care of Hajime well, and also worries about us, the family, as well. I will definitely keep in touch with her from now on too.

Also, it was sad to part from Diana, Caseworker, who helped us all the time. She was very professional and we really respect her for the way she worked. She is also the one who always looked after us and worried about. We would like to stay in touch with her as well.

We are grateful to meet such nice people.

At the time Hajime was hospitalized, the things were pretty mess and hard to manage…
We came into conflict with Nurses and wondered what to do when Hajime was in low spirits…
However, we can now think it was good to come here. We learned a lot and experienced.
We do appreciate for people at the hospital and all the support provided to our family.

It was after 11:00am that we left the hospital. Both Hajime and I were transported by the ambulance but I had to be in the assistant driver’s seat and couldn’t stay with Hajime.  

We arrived home right after 12:00pm! Finally, we came back home together!

I couldn’t stop shedding tears… I was so happy as I waited very anxiously for this day.

Around 1:00pm, Nurse, Tammy, visited us. She is the one who is going to take care of us from now, even for a short while. Stu helped us as well. After then, firemen came to see us. It is important to know each other for just in case something happens to Hajime. They all looked “cool” (to me)!

Then, RT and friends came by and it was the busy night.

Well, it was a busy day of discharge from hospital.

Translated by RM and YM