It has been 1months since Hajime's hospitalized

It has been already 1month today, since Hajime was hospitalized. Time
really flies. But Hajime's disease progressed a lot in this one month.
When he came to the hospital, he walked by his own, he could lift his
neck by his own, and he was breathing by himself.

But now...
It is too sad reality.

Yet, we are very happy because his discharge seems comes closer!

Hajime's doctor's duty in ICU finishes today and transfer to the other
department. ICU doctors also have transfers... From the time Hajime's
hardship till now, he has been close watching Hajime so much, and did
his best for Hajime. We really appreciate him.

We took pictures of Hajime with the doctor. Look, he looks very great,
doesn't he?

 










We are really glad and thankful to encounter this doctor.

Today, Hajime was doing very good and cheerfully smiling a lot. We had
many visitors Hajime loves, so his smile shone more!
 

 







We are really encouraged by visitors. Thank you all visited him!

I put cards for Hajime on the wall. Look at this. Cards are plenty
enough to cover the wall. But this is just a part. We have more cards,
even we don't have enough space to put all of them. When I see this, I
just respect a person, Hajime.

 









Although we have put them, we got an announcement that Hajime would be
transferred to telemetry. So, we had to displace them soon.

Anyway, we left ICU. This section is less urgent and a little bit more
intensive care than general wards. And Hajime got a private room.

He's transferred to the better section, so a little more patience till
discharge!

We also have to do our best for trainings.


Translated by Satoko Okamoto

He Stood Up After About a Month

Today he gave his effort to stand. The PT came about 11:30 and with our support, he tried and got up from his bed.
It’s been about a month since he last stood so he couldn’t stand up straight
for his legs have weakened and his posture was bent at his lower back.
 
It must have been very difficult, he cried time and time again.
 
He walked with support for a few steps from the bed to the chair and was sitting there for a few minutes.
I guess it’s difficult for him to sit, he soon said that he wanted to go back to the bed.
But because he did get to sit (after all that effort)….he sat a little more and then he went back to the bed.
 
It maybe because he wants to go back to bed that from the chair to the bed,
his posture was straight and his father did not have to support him as much on the way back to the bed.
 
This takes daily practice, so PT from here on forth is going to be difficult.
 
In the afternoon there was a meeting with the palliative care team.
Before that there was a meeting with Hajime’s ALS doctor.
We discussed about the exams that he would be having from now and as expected my heart hurt.
When I think about how this disease, ALS is going to progress and how Hajime is going to feel, I start crying.
 
Because we had these two meetings around the same time, we had a very busy day.
 
These days that are filled with training for the day that Hajime leaves the hospital, is going by very quickly because we’re so busy.
We have to get our house ready as well, but nothing is done.
We have to move everything out of my husband’s room but since we’re always in the ICU we only have time after midnight.
Regardless, I have to do it.
Umph!-I have to work harder.
 
After that Hajime sat again with his bed turned into a chair.
This time he sat for two hours.
He did really well today.
 
 
Translated by Christine Shirota

A Tough Decision

Hajime wasn’t doing well from morning again.
During the day, it seemed like it was too hot, so much so that he sweat a lot.
He spent the day with ice packs on his forehead and under the arm.
It maybe because of the slight infection that he has, he didn’t stabilize throughout the day.
 
In the early morn, he had problems with his breathing and we couldn’t settle down for awhile.
I told this to the doctor and the doctor discussed about it with the ICU doctor.
 
As a result, Hajime has to have the ventilator 24hours a day from now on, forever.
 
There were times that he was able to take the ventilator off during the day and night but there are good days and bad days.
Looking at the whole picture there’s a high risk of breathing complications and thinking about it from the safety point,
it is necessary to have it on 24 hours….
That is what they decided on.
 
Hearing about this from the doctor, Hajime was crying.
Huge tears were falling down his cheeks…
 
We, the parents were shocked too.
 
Before he was hospitalized, he walked into the hospital himself and he breathed on his own.
It made me realize once again how far this disease had progressed in one month.
 
I think that the day to leave the hospital is soon, but because of this decision(about the ventilator) our family’s life will change drastically.
I’m happy that he can leave the hospital but the disease doesn’t know where to stop its progress.
It is too difficult to take this reality in.
 
I want to make Hajime feel better. This reality is just too hard so I think that it’s important right now
to encourage him to look forward to going home early to see his brother and sister.
 
 
Translated by Christine Shirota

He Just Wasn’t Up To It.

This morning Hajime was smiling when I visited the hospital.
But as I talked to him about his brother Ryo, he became sad again and he started crying again.
 
I talked to Ryo about Hajime’s tears last night and Ryo cried just like Hajime when he heard about it.
And I told Hajime about that.
 
I thought that these two must have a very strong connection.
 
After Hajime cried, he wasn’t doing really well and he had a little fever in the morning too.
In case he’s infected by something, we had various testing done.
We don’t have the results yet, but we should know tomorrow.
 
People that get a tracheostomy easily get infected if they are not careful.
The mouth is strong against germs but the throat is very susceptible.
And there’s a artificial opening there so we really need to be careful. I am worried about now on.
 
His condition wasn’t his best, and having considerable amount of pain, Hajime did not have PT for today.
I thought that it can’t be helped to have this kind of day. For me, I want him to give his effort to move…
but the most important thing is his will to try so I thought,
this kind of day is necessary for Hajime who’s not in his best.
 
I worry that the longer he stays lying in his bed, his muscles will weaken that much faster.
I hope that he walks while he can still walk.
 
I wonder、 will he’ll be able to try tomorrow?
 
 
 
Translated by Christine Shirota

A Moment of Happiness

Today, there were two joyous things.

One, they took the tube out of his chest.
Because of the problems with his lungs, we couldn’t take the tube out for a while after the surgery.
This tube has been increasing Hajime’s pain.
But now we just have to wait for his wound to heal.

I get really blissful when I think that the day to leave the hospital maybe coming soon.

And the other thing is, our family was finally able to reunite. !

Up until now, Hajime has been going through some sensitive periods and Yuki who’s 7 years old couldn’t enter the ICU. But, the nurse for today was Hajime’s favorite nurse.
His name is Joe.

We asked if it’s okay to bring in the children, and he answered right away, “Sure!”
I was so happy.

And the person who brought my children to the hospital was Paul.
If he wasn’t there for us, my children couldn’t have come to the hospital.
Thank you so much!

With the help of these people, a moment of family time was realized.
Hajime looked so happy~.

Because of the nurse we were able to spend a fairly long time as a family, and Hajime kept on having eye conversations with his brother, Ryo. They were holding hands for a long time….It was very lovely……The two of them were shining brightly together.

I think by seeing his family, it has stirred in him the desire, “I want to go home!”
Up until now, he has lost much of his confidence, and in his mind he was thinking that he’ll probably never be able to walk or sit. He didn’t have confidence to go home…
But that Hajime was crying saying that he’s lonely and he wants to go home.
I thought again that it’s important that the family is able to unite.

After the moment of happiness, there were the sad good-byes.
“Hang in there brother!” It is immeasurable how much Hajime was encouraged by these words.
As soon as they left, he started to have big tears flowing.
It was the same as the time that we left after he was hospitalized.
He had big tears streaming down and was telling us that he’s lonely…
They were the same tears.
I think from the bottom of his heart, felt lonely.
And that feeling led him to have the courage, “I’m going to get better soon and go home!”

We truly spent a precious time together.


Translated by Christine Shirota

It’s Difficult

Hajime’s been showing good signs of post operation recovery. He’s still in a lot of pain, but he’s starting to be able to withstand the pain.

Something happy happened today.
Hajime’s best friend came by.
He was finally able to see who he wanted to see from since he was hospitalized.
Hajime was very happy and he kicked his legs like a little child.

Hajime was looking at him with a very wide smile.
But Hajime’s expression gradually changed into a sad one.

Hajime was thinking that nothing would change from when they were very close.

At first Hajime was trying to talk to him with his eyes and smiley face.
But his friend couldn’t recognize Hajime’s silent words.
He was also shy and he didn’t speak much to Hajime either.
Perhaps because they haven’t seen each other for a month, maybe it was awkward.
But I also think that it maybe because Hajime has changed so much that he didn’t know what to do either.

Seeing Hajime’s sad face made me teary eyed.
He must have wanted to talk much more to him.
He must have wanted to call his friend’s name much more.
He was finally able to see him after waiting for over three weeks, but…

How much he must’ve cursed his life.
How much he must’ve hated his body.

The way he looked is forever engrained in my mind.


Translated by Christine Shirota

The Day to Take the Tube Out is near

A night has passed since the operation, and the tube from Hajime’s lungs do not seem to have any air leaks.

If there is air leaking, there’s a box that checks if there is any air leaking, but there were no bubbles apparent in there.

The surgeon came in and after he checked that there are no bubbles, he told us that they could take out the tube soon.

I am so gla~d! So, so glad.
The day to take out the tube that hurt him so bad is near.
Now if he recovers at a good pace, I am thinking that we could see the day that we can leave the hospital.

Today Hajime was sleeping a lot during the day. There weren’t any problems with his breathing especially.

My husband and I had a family meeting in the afternoon.
The doctor, charge nurse, his nurse, discharge coordinator, and social worker were there
and we had a very productive time.

They listened to our questions and told us everything in details. They weren’t even watching their time…
Everybody is cooperating with each other as a team so that Hajime could comfortably spend his time hospitalized here.
It was truly a very valuable time.

It seems like he’s staying in the ICU until discharge, but because of this team, we can spend time here without worrying.

& I hope I can see lots of Hajime’s smiles~.


Translated by Christine Shirota

It was a Long Day

Hajime had a difficult time falling asleep last night, and he said that he wanted to go back on the ventilator
so he was put back on the ventilator from early morning.
After that he slept for awhile.
Lately he hasn’t been able to sleep much so I am glad that he got some sleep before the surgery.
He was also sleeping during the day too.
 
Today, we were instructed for an hour on CPR again and we reviewed what we did yesterday.
We were reassured when graded as, “Perfect”.
But I am really worried if we’d be able to do it perfectly if there’s an actual need to administer it.
 
I was really worried about Hajime because he was very nervous after waking up from sleeping for several hours.
He had an anxious expression and kept on saying, “I’m scared, I’m scared”.
 
At around 5 o’clock the staff came and transferred him to the OR and I was getting very nervous too,
perhaps because I felt how anxious Hajime was.
But my husband helped me to relax by talking continuously and I was able to calm down.
 
Hajime and I are like one so I thought that Hajime was probably able to calm down when my heart calmed down.
 
It was about 7:30 when he returned to the hospital room after the surgery. Hajime was sleeping with a very peaceful face.
 
Today was such a lo~ng da~y.
 
Nevertheless, I am glad that Hajime’s surgery went well.
 
 
Translated by Christine Shirota

I received CPR training

A very good morning for Hajime.
In the afternoon, he said he was cold and slept with a blanket.
 
Actually this morning, Hajime’s breathing choked again.  In conclusion, the position of the tracheal tube was bad, and he couldn’t breathe.   We were told that if his chin area is not kept clear, the breathing problems will recur.
He settled down when we put the pillow under his shoulder’s but then the nurse and the respiratory therapist (RT) began arguing.
 
Since Hajime’s neck muscles are weak, he needs to have it supported.  So the nurse was supporting his neck and the RT was about to put the pillow under his shoulders.
 
But the RT was a little slow.  The nurse angrily said, “What are you doing!”  The nurse said more things to the RT, who seemed to get fed up and retaliated by standing back without suctioning for the tracheal tube, the reason for this being because the nurse is in the way.  The nurse said, “Hurry up and suction!” to the RT but the RT complained that, “I can’t do it because you are here.”
 
I didn’t think this was appropriate for a nurse to be arguing while Hajime’s was choking (this is a very dangerous situation).  I got the chills thinking what would have happened if something happened to Hajime. At one point, Hajime’s oxygen level was down by half and he was kicking his feet as he struggled for oxygen.
 
I spoke to the Charge-Nurse (the nurse responsible for resolving the situation when there is a problem).  I asked them to change the night shift nurse as well.  I couldn’t believe such behavior from a nurse who is responsible for the lives of people in the ICU.  I really felt the extent of the nurse’s low level.
 
Because this happened in the morning, Hajime’s fear increased and he kept saying, “I’m scared.”
 
Also, the matter regarding his surgery came up and the doctor informed us that his lung surgery may be as soon as tomorrow.  Hajime’s pain had just started to subside and I just felt so bad that he would have to undergo another big surgery.
 
With all this going on, Hajime lacked some energy and spent the day under the sheets, and also due to tiredness Hajime was sleeping all day.
 
While Hajime was asleep, we received CPR training. If Hajime’s breathing chokes and his condition worsens, we would need to massage his heart, so we received training for it.  My impression was that this would be pretty difficult to do.
 
The heart lies between bones so in order to massage the heart from the outside of the body, you have to press 2 inches into the body or blood will not circulate throughout the body. And you have to massage the heart 30 times and breathe for them twice. This has to be done approximately 5 times while you wait for the paramedics to arrive (if after 5 times the paramedics have not arrived, you just have to continue doing it).
 
Tomorrow will be a review of today. I will go again to see if I remember the training.
 
For Hajime, since he has the tracheal tube, the emergency response is different from the usual, so we are scheduled to receive training for this on a different day.
 
I get nervous when I think, in an emergency situation will I be able to remain calm and save his life?
 
…such was my long day and I was pretty tired after staying in the hospital room from early morning to night with no break. I didn’t even have time to drink water…
 
It’s all for Hajime!  I have to stay strong.
 
 
 
Translated by Ethel Hoshi

Tracheostomy with cuffed tube

Today, Hajime was able to spend the day good cheer.
 
The CT scan from last night did not show any problems. Of course I was relieved, as were the doctors.
 
It seems Hajime’s sleeping position, that is, if the pillow is under him up to his shoulder’s
it keeps his chin and neck area clear and the tracheal tube does not shift and is better.
The current tracheostomy is the type with a cuffed tube (balloon), which inflates without air escaping. 
When he is not on the respirator, the cuff is deflated.  During the times the cuff is deflated problems tend to occur.
 
Usually, when the cuff is deflated, there are fewer problems due to his secretion.  However in Hajime’s case it is the opposite.
When the cuff is inflated, he has less secretions, and he seems to cough less. 
He usually has less secretions in his mouth as well. However it is not good to leave the cuff inflated.
 
The advantage of having the cuff deflated is that he should be able to speak,
but Hajime has not made a sound for 20 days already so it is almost as if he has forgotten how to speak. 
He seems to have lost confidence.  But I want to hear his voice once again.
 
But, when the cuff is deflated, there is more coughing and a lot of secretions so this causes breathing problems. 
Even though the fluids are suction many times, he seems pretty miserable.
 
The doctor would like to change it to a uncuff type but it seems to be difficult.
 
Getting back to what I said earlier, the cuff was inflated today so he was able to have a good day without many problems.
 
Also, he will be spending tonight without the respirator.  In this way, I hope he will be able breathe more and more without the respirator.
 
Will he be able to continue until tomorrow?
 
 
Translated by Ethel Hoshi

Breathing Problems

Hajime had a pretty calm morning but around 11am, we began exercises to sit in a chair.
 
This was not like before where he walks the several steps to the chair,
this was a customized chair (converts to a bedlike apparatus).
This allows the transfer of his body along with his sheet. 
Therefore we were able to transfer him without causing him much pain. 
 
However, after sitting for a while, it seemed it became harder for him to breathe and
he would want to return to the bed. He did however stay sitting in the chair for 1 hour and 30 minutes.
 
After he reached his limit, we returned the apparatus to the bed position,
but later tried to sit him up in the chair again. 
This appeared to be a bad idea and due to this action, he had a lot of secretions.
 
When there are a lot of secretions, it seems to cause breathing problems and Hajime seemed to be suffering a lot.
 
We called the respiratory therapist and sucked out the secretions many times
but his breathing did not stabilize and he had to go on the respirator again. 
Even then his oxygen level remained a bit low. 
 
Once his breathing settled down, we went to the waiting to room to rest a bit.  But when we returned things were bad.
 
Hajime’s breathing was labored again and his heart rate was high, so the nurse had just called the doctor.
Hajime’s face was red and he was in pain.
 
For this, the doctor ordered an x-ray but after a while Hajime’s condition began to settle down. 
By night fall, his heart rate also lowered and we were relieved. He was then scheduled for a
CT scan in the middle of the night, so at 10pm, he was headed to the CT.
 
I had come home but they contacted me to let me know that the CT scan was completed and Hajime’s condition was stable.
 
I don’t know if it is because he was on the respirator for a long time, but sometimes
it seemed like he would forget how to breathe on his own. 
When he would have trouble breathing, he seems to think, “My breathing is going to stop…” and gets very scared. 
I think this fear causes his heart rate to increase even more.
 
Hajime made it through these fearful moments, holding on tightly to my hands and his father’s hands.
 
He held on tightly with his hands that have lost much strength.
 
 
Translated by Ethel Hoshi

Checks Pay to the Order of

Thank you everybody for always reading this blog.
We are also grateful for all of the cards and donations.
 
I’d like to take the opportunity to apologize here for not being able to reply in a timely manner.
As soon as Hajime is out of the hospital, I am planning to reply one by one, so please have patience with me.
 
We have been receiving donations from many people, but we haven’t been able to process some of them
 due to the checks having been written out incorrectly.
From now on, please write the checks as below.
 
Checks are to be payable to…
 
Hiromasa Miyasaka
 
On the memo, located on the bottom of the check where it says “For”…..
 
Hajime’s Fund.
 
Previously, we have been requesting for the checks to be payable to FUMC,
but we can no longer accept checks written out to that name.
For that reason, please write the checks payable as described in the above.
 
And there are some checks written out to Hajime’s Fund, which is supposed to be written in the memo.
With that name we can’t process it. For those that have given us a check written out to Hajime’s Fund,
we have been returning the checks by mail to be corrected, so please do not make that mistake.
 
We are truly helped extensively by everybody’s support. We can only go through this because we have your support.
We sincerely thank you very much for always supporting us.
 
 
Translated by Christine Shirota

Thank You Dad

Today is Father’s Day.
Hajime used the speaking device on his iPad to tell something to his dad,
who was sleeping over from last night.
 
“Happy Father’s Day”
 
Dad was all in tears again….
Although Hajime isn’t keeping up with the days of the week,
it seems like he knew what day today was again.
 
To receive these words with Hajime’s smile is something that truly brings happiness,
isn’t it?
 
And Hajime had his hair washed last night. He had a very fresh expression on today.
 
The sitting position that the doctor told him to do twice a day on his bed.
He gave his effort from morning again.
Not only that, he was able to sit for 2 hours.
 
Although it’s on top of a bed it is still extremely strenuous to sit.
He also gets very nervous from a combination of the feeling of fear and the feeling of pain
when he gets the neck collar on him.
 
Every day is filled with challenge after challenge. I feel that in order to return to our daily life,
this is how he gradually gets stronger. And I pray that his feelings will turn much more upwards.
 
Tonight is my turn to stay overnight.
We always hold hands and talk about various things before we go to sleep and
today he was smiling over and over again. Making his face all bunched up…
It was truly a great moment.
 
I hope he could relax more tomorrow~.
 
 
 
Translated by Christine Shirota

What kind of dream is it?

This morning round time, Hajime sat on the bed. The doctor put the
Headmaster properly to his neck to make it sit on the corset. So he
could sit without bending his neck. He sat with very beautiful
posture.

But because his neck was bent many days, it was difficult for him to
make it straight. So he had to straighten his neck little by little.

Hajime was crying. He was afraid, and felt bad being made it put on
and sit, maybe. He must felt very difficult.

Yet, we harden our heart and talked to him because we wanted him to get up.

We cry automatically whenever we see his tears. It is the most
difficult time now. However we want Hajime to stand up with courages,
though he lost happiness even to stand up now.

It is very hard to see Hajime changed completely.

But today, we had a little thing like this.

Since he got hospitalized, he couldn't sleep well because he gets up
to even a small sound. But, Hajime could sleep from the evening. The
sleeping face was the same when he was very young... very supple
hearted face, and sleeping.

Then, Hajime smiled while he was sleeping. A very cheerful smile. What
kind of dream he is in, I thought. It saddened me, when I thought it
must be the dream he could move freely.  Hajime must be disappointed
when he woke up, knowing his reality, I thought.

I really feel sorry for Hajime. My God, please, please save Hajime.

I want Hajime to hope for his life though his body does not move freely, now.

Hajime, because you are wonderful...


Translated by Satoko Okamoto

The Nurse’s Chit Chat

Even since exchanging tubes last night, Hajime has been fearful.
I was told that throughout last night, he was holding his father’s hand.
He has lost his voice, his muscle strength weakened so he can’t move,
and so he’s probably scared of everything that happens in the hospital.
 
I have written about the nurse before, well, this is what happened today.
 
Hajime couldn’t go to school until the end of the school year.
Considering his current condition, we don’t know if he can go to school next school year.
We don’t even know if he can graduate.
 
The two nurses, the nurse responsible and an assisting nurse come to change his gowns,
but the nurse that assists talks about her son every time she comes.
She said, “My son graduated high schoo~l.”……
 
It seems like a harmless conversation, but for our family right now in this current situation,
it’s very hurtful to hear. Hajime is also probably thinking that he can’t graduate school too.
 
Maybe it’s only the nurses here but I’m thinking that they don’t have enough understanding of ALS.
There’s even a nurse that thinks that his tracheostomy tube is a temporary thing.
And they talk about it out loud. A lot of the times we are startled and confused by what the nurses say.
 
They all don’t mean to.
 
It is very disappointing that the people expected to understand the most understand the least.
And the hospital staff is somebody that we’d really like to have an understanding.
 
Through Hajime, I want them to know more about the disease ALS.
 
I hope the nurse for tomorrow is somebody with more understanding.
 
 
 
Translated by Christine Shirota

Exchanging the tube of tracheotomy

Today, the day after the operation, Hajime seemed he has a lot of pain
from his wound and had painkiller injections many time to hung on.

He put the ventilator only at night usually, but he needed it after
operation yesterday until 10:30AM this morning. When he takes it off,
his breath is disturbed and it seems a lot  troubled.



But it will be more trouble after going home if he cannot get used to
it. I hope he will, even gradually.

Hajime shake me and dad's hands strongly and telling his feelings with
his eyes. Sometimes it makes me in tears when I see his very saddened
eyes. I cannot feel sorry enough for him. But sometimes Hajime stares
at us hard with smiles, and it encourages us... Hajime is very kind
son.



How is it?
Even after the operation Hajime shows us his everyday smile. I am
really relieved whenever I see his face like this.

Today, Hajime needed to change his tube of tracheotomy to a little bit
smaller size. It seemed proceeded easily. But Hajime was trembled very
much. It must have terrified him. It was also shocking for us seeing a
hole opened at his throat. The shock was beyond our expectation. We
again felt he was doing his best.

After changing the tube, he was troubled breathing, oxygen level got
down, and we were all anxious about that. Yet Hajime managed to get
back to normal, so finally we were all happy.

But... after going home may be really difficult.


Translated by Satoko Okamoto

The Surgery Went Well

On the day of the surgery, which is today, there were some problems with his breathing from morning
and for a time we were bustling about, but perhaps it was because of the sputum in his throat,
after removing it his breathing had settled.
 
For the past few days when we remove the ventilator in the morning that he uses during the night,
maybe because his breathing doesn’t catch up, he gasps and moves restlessly.
The problem with his breathing is a tough one.
 
After that he spent his time rather calmly and about 4 o’clock he went into the OR (Operating room).
It’s overwhelmingly sad to see Hajime go off into the OR.
I know he’ll come back safely, but I’m still worried.
Hajime also has a pure, straight face on the bed.
I tell him to, “Hang in there. (ganbatte!)” And I left the OR with my husband’s support.
 
Right about an hour later, the doctor gave us an explanation.
“The surgery went well.” I was so saved by these words…..
It’s because of everybody’s prayers. Thank you.
 
After that, he came back into the ICU.
His sleep was light and he was already complaining of pain.
I want him to sleep while the anesthesia is still working, but it seems like he’s become sensitive in various areas.
But he received pain reducer and he was able to sleep a little after that.
 
In this surgery they inserted a camera using the pipe that’s been attached, but now he has another new pipe.
They said they’ll take this pipe off in a few days so it’s just a little while longer that he has to withstand this pain.
 
But I’m really glad that the surgery went well without any problems.
 
I am deeply thankful for all the encouragements and prayers from everybody.
 
 
 
Translated by Christine Shirota

Happy Birthday, Daddy!

It is Hajime’s daddy’s birthday.  Hajime asked dad to pass him iPad.   He wondered what Hajime would do with iPad and looked into the screen and then found the very delightful words. 

Happy Birthday

This touched his heart very much and he was crying.   Since Hajime has been laying on the bed all the time with no sense the day of the week, he was not supposed to remember this day… but he did even without being told by anybody. What a kind boy he is.   Dad was encouraged and lifted up with Hajime’s smiling face. 

Hajime had the X-Ray exam and it was found that the air-leakage/ hole on his lung is getting larger.  Although we once thought no operation would be necessary, it might be needed because of this. The major operation increases the success rate though.  Like joining the lungs to the wall to keep air coming away . We have been told that this could happen again later he get back home so we have to consider that too. Hope the impact is minimal considering how he recovers.   

Hajime looked happy all the day with many visitors today.  He is very happy as he has many friends. 

Dear Hajime’s friends. Thank you always for your kindness. 


(translated by YM & RM)

He may have an operation tomorrow...

I am thankful to everyone reading this blog. Supported like this from
every one of you, we can go on. Thank you very much.

Today's Hajime was watchig TV all day long. He really concentrated on
watching movies one and another... But when we think he recovered to
be able to concentrate on movies, we feel graceful.

This morning, we had a talk with the doctor about an operation. Hajime
has to have the proper operation, still. And it may be tomorrow.

The tube is inserted to the place of air leaks from his lung. And it
has been days already. It was not healed completely. One day better
and again air escapes to outside, found by Xray. It made us upset.

So, it does not make him good, the next operation will insert a
camera, watch and seal the lung by chemicals. I hope him to be
recovered by this operation as soon as possible.

This operation risks not higher than regular operations. So we try to
get over this with faith in God protecting him.

Around noon, Hajime had a physical therapy session. He tried hard and
sitting on a chair for an hour. Longest time so far. He broke the
record!

But today, he appealed his difficulty many times, and we were anxious.
Yet, we endured because it was only his plus it was a little bit more
than usual rate. So, told him "little more, a little more" to let him
stand there. He made it!

Right now, it is important for him to make a move, I want him to try
even a little bit day by day.


Translated by Satoko Okamoto

Everyone Loves You!

Today's Hajime was not really well. We had a thing like this...

Hajime told about the trachemostomy operation he had the day after he
went to ER.

I did not want to get this thing from the first place.
I was pressured meaning emotion.
On friday if you remember, I had to decide about this thing.
I said no but she (Hajime's doctor) thought that I said yes.

Hajime did not want to put it on. While he was half asleep because of
anesthesia, his answer was NO. I told him we did not know what
happened to his life without the trachemostomy operation... But he
could not accept it. "Ok then, now."........

He was hurt deeply. Already it is there, so we cannot do anything
about it. But if I could not reply to him better...? I feel so bad
about myself.

I do not know how I could tell him.....

Due to this thing, he was upset all day long. But some great thing
happened to cheered him up.

This evening, Cheri and Erica came to meet him. And let him join the
party by the high school club through Skype. This party was for
Hajime, but because he was hospitalized, and could not join. Instead,
through Skype, he could meet everyone.

As soon as he was on the screen, "wooo" and "aaaah" were came out from
them. They encouraged Hajime. One by one, came in front of camera and
gave him messages.

I was in tears.
I was so happy knowing Hajime is loved by everyone so much.

Hajime put on King's costume!

Look at his smile!

It was really great seeing such a great smile of his!
Hajime Loves Everyone, too!!!

Translated by Satoko Okamoto

The Power of Friends

Hajime’s classmate came to see him in the morning.  His name is Mark.   Since Hajime was moved into the hospital, he often visited and encouraged Hajime.  As he knew Hajime could not speak well, he always has spoken to.  He is such kind-hearted.  

Mark and Hajime promised to do exercise, and Mark showed up this morning to fulfill the promise. 

Even though Hajime did not feel good at all both mentally and physically until yesterday, Hajime agreed and said “please raise my body” with no hesitation.  Three of us, nurse, husband and Mark, moved him into the chair.  Hajime did not make him look painful at all, and they responded each other with thumbs-up.   What a heartwarming scene!      
I realized how powerful friendship is.  Thank you very much, Mark & Alice!!!

I have happy news today.

Although we were once advised that Hajime would have to have an operation again, it appears that it is not the case now. Since we expected the major operation, his leaving hospital was supposed to be delayed at least by a couple of weeks. Now only the simple surgical operation is necessary, it can be conducted at ICU he is now in.   The tubes in the lungs will be removed and it shall bring him some pain, however I hope he can be patient. 

It is quite important that he would feel strong inside to withstand.   As he can watch TVs soon, I hope he will feel relieved.   I am very happy as I will be able to see his happy face. 




(translated by YM & RM)

The Power of a Friend

Today, from morning, a classmate came.
His name is Mark.
Ever since Hajime’s been hospitalized he came numerous times.
He encouraged Hajime.
He understands that Hajime can’t speak and he talks to Hajime about various things.
Mark is truly a sweet kid.

Mark promised Hajime that they’ll exercise together.
This morning he kept that promise.

Until yesterday, Hajime’s feelings and his condition weren’t up to it,
but today, without any hesitation agreed and said “I’ll try to get up”.

It took the three of them, the nurse, Hajime’s dad and Mark to help Hajime sit on a chair.
Hajime didn’t show any signs of pain and when Mark gave him the thumbs up,
Hajime also gave Mark the thumbs up!
It was indeed a pleasant sight.

I was reminded of how great and powerful a friend is.
Thank you, thank you very much, Mark and Alice.

And I had some good news today.
We were told before that Hajime has to be operated on again
but it turns out that it seems like he’ll be fine without that surgery.
That surgery, they said, was going to be a complicated surgery
so we were expecting the hospitalization to extend another few weeks at least.
But the surgery that he does need to have is a rather simple one that can be done in the ICU.

In a little while, I think they can take the tube out of his lung
but this will again be painful so I really want him to hang in there again.

And, I thought that Hajime’s feelings are very important.
Today, he was able to watch TV again so I’m thinking that he must be feeling much better too.

I’m so happy to be able to see his smile.


Translated by Christine Shirota

He made great effort to walk

Hajime could hardly sleep... Only around 2hours he could sleep last night.

This morning, as usual a doctor came to him and said "Let's walk at
the Physical Therapy! Good luck!" He was at a loss.

It is because of pain at the places inserting tube to his lung.
Because he had operations one after another, his scars seems trouble
him a lot.
The tube was placed between ribs, and around the tube's hole was
seemed to be the most sensitive area having a lot of nerves. So, it
must be painful, more than other places.

Therefore, just after the operation, he even could not get up or
walking. Because he did not do the therapy one day yesterday, the
doctor pushed him to do it.

He did not really feel like doing it, because he could not sleep
enough. But Hajime tried very hard.

Around the noon, PT came to him, and he got up with the headmaster.
Today, it was his father to get him up, so Hajime must have felt
comfortable and could get up. Of course it is with a lot of pain, so
with big tears came out from his eyes, though.

From the bet to the chair, walked for a few steps, and finally sad
down to the chair. He made it for 30minutes! Saying "I cannot do any
more..." But he did it so hard. Good Job!

After that, we took a rest. Although, we could not sleep at all.
Meanwhile, ALS specialized nurse came. While we were the waiting room,
we did not know, but the nurse came after seeing Hajime, and her eyes
were filled with tears. She said, when she took his hand and talked to
him, Hajime smiled to her... It must have been shocking for her seeing
Hajime totally changed, but she was also feeling so happy seeing his
smile.

Really, Hajime's smile has power.

This nurse recommended us to go to ER before, and she saved Hajime's
life. If she did not, we just got back home and he might have been
choked, and big accident might have happened. We cannot thank her
enough.

After that, the counselor always talks with him came to Hajime's room.
Considering his recent emotion, we requested for it. So, the counselor
came soon. For a while they talk a while for two. But it finished soon
because he cannot talk orally. Yet, the counsellor was also worried
about him.

One after another, so today many things happened. Hajime must be tired
a lot. I hope he can sleep soon. Before hospitalized, he needed a lot
of sleeps, so I feel so sorry for his condition now.

Please nurses, let him sleep tight tonight....

(Translated by Satoko Okamoto)

He Wanted To Go To Japan

Today, he didn’t have the surgery with the camera as they were saying last night.
I had a brief moment of comfort and then I heard about the sad reality.
 
It is truly sad news…
The trip to Japan that he really wanted to go…is no longer possible.
Even though it was Hajime’s last wish.
 
The reason for this is because of a condition that he has in his lung now, pneumothorax.
It is a condition that for whatever reason a hole develops in the lung and the air escapes and
surrounds the outer area of the lung and shrinks the original size of the lung.
 
A person that develops this condition can’t board an airplane for several months.
And when it is life threatening, as is for someone like Hajime, one can’t board the plane for the rest of the life.
If he does board the plane, the lungs expand because of pressure during take off and landing which is very dangerous.  
 
We received so much support from everybody, we had received great support from Mr. Millheiser 
and I have no words to say. I am feeling very very sorry and I don’t know what to say.
 
I hate this disease that developed from this hospitalization which started with breathing difficulties.
We were trying so hard holding on this hope……
 
I am truly disappointed and vexed.
 
But Hajime wasn’t too surprised hearing about this. It seemed like he had already given up in his heart from before.
 
Our next hope is the Anime Expo that he’s been looking forward to.
It’s an event that will be held at the Los Angeles Convention Center from 7/1 to 7/4.
I hope we can definitely and safely go to this one!
 
 
Translated by Christine Shirota

A House Inspection

Our youngest children Yuki's classmates made such a beautiful thing!

Thank you Grade 1 Students!

By the way... there are conditions for Hajime's discharge.

Unless we can pass an inspection about our house, which includes
security and electricity, Hajime cannot come back home.  Also this
process takes at least 5 days. The discharge has been extended more
and more.

Actually, we had the inspection today. To sum up, we failed.

Firstly, Hajime usually sleeps at a bunk bed. But they said it is out
of problem. Hajime has to have a medical bed (electric and hight
changeable). And he had to have a private room, they said. We have to
consider the case he wants to call someone. They told us not to put
anything at the corridor. Because if an emergency service comes to
carry him, it would be obstacles. So, those carton boxes in our house
had to be removed.

Also, our house is at the second floor. However, considering Hajime's
current condition, we have to find an apartment at the first floor. To
meet those conditions, we have to move to somewhere.

WE ARE IN TROUBL! The very situation like this.

I pray everything to be arranged.


(Translated by Satoko Okamoto)

An Operation Again...

Today's Hajime had a good face much different from yesterday!

Today's nurse in charge of him was very good nurse it may thank to the
talk with the yesterday nurse, about painkillers and comfortable
care.. He is a male and very funny guy. He greeted to Hajime "Hello,
my friend!!" And Hajime thumbs up and greeted smily.

We requested a ventilation specialized nurse because he appealed chest
pain. Although the ventilator was taken off in the early morning, the
nurse asked him if Hajime wanted to put it again. Hajime told the
nurse to do so, but his plus, respiration rate and oxygen were stable
and good rate. So the nurse told him to hung in there a bit more. In
the end, he did not put the ventilator on all day.

Later we had X-ray examination. Well, that's portable, though. The
result was showing his lung condition was good condition. But because
why Hajime's lung got a hole was questionable, the doctor requested to
take CT scan. So, we did it after PT visit.

Anyway, PT (Physical Therapist) came to adjust the corset called
"Headmaster" to his size. So let Hajime get up. Hajime's neck muscles
were weakened more. Really, day by day, it becomes weakened and he
cannot support his head by his own. That "Headmaster" was a little bit
bigger to his size and it needed some supporter because it made his
head bend backward. Thus, it will be next time to try again.

And we had CT scan. This scan resulted Hajime to have another
emergency operation. This operation was to put the tube to the other
place. X-ray showed his lung became better. But CT scan showed air
leaks from a little hole was happening again and it made Hajime's lung
smaller again. When we saw the picture, we could see the difference
clearly. The sudden operation made my husband and I very be shaken.

Before the operation, we got a talk with the respiration specialist.
The doctor said unless the reason became clear, this situation might
happen again. If it would happen again, it would be very risky. So it
would be better to take an operation.  Although there are options not
to take an operation, considering recent condition of Hajime and
progress of the disease, it would be better to take it, the doctor
says.

Hajime has to have an operation again! ...... It was too shocking for
us. We have not told him yet. But we worry what he will say. The
doctor said that Hajime would have a check up inserting a camera to a
place of the tube.  Tomorrow will be not happy day again.

(Translated by Satoko Okamoto)

I want…

Today was a very hard, hard day for Hajime.
 
Because the nurse would come in every hour at night, he couldn’t sleep,
 but his wound gave him too much pain so he needed to get his pain medication.
He might have been very tired too.
 
In the morning there was an examination by the doctor and we were shown his x-ray.
The condition of his lungs change every time the x-ray is taken and
we could see that it’s gotten much better.
 
The care in the ICU is inconsistent.
The way they care for Hajime is totally different depending on the nurse.
It’s so bad that I wonder if I can just ask to have the nurse skip him.
A nurse helps him to roll over, but there are some that do it in a very rough way,
so much so that the pain in his wound gets to the peak.
 
The nurse that came today was the nurse that Hajime hates.
Though, the nurse from yesterday was very nice,
and was even considerate towards his emotional well being.  
The difference between them may have been too big.
 
When they roll him over or make beds, there is always a male nurse that helps,
but they do it depending on their strength only.
Because of the way they do this, it seemed to hurt him a lot today.
Even though it has only been a day since the surgery with tremendous amount of pain from it.
 
He was finally gradually getting better and recovering,
but coming to this point his condition took a drastic change and we were very worried.
 
And when he received one of the breathing treatments, he coughed profusely.
The lack of sleep, exhaustion and the great pain he has…
he must have fallen to the pit of pits, these words came out of him.
 
I want die……….
 
At first, I didn’t understand what he was saying.
Hajime showed us by gesturing; shooting himself with a gun and stabbing himself in the heart.
I was shocked when I had realized what he was trying to say.
 
Until now, he has been saying such things as he’s scared to die,
but I didn’t think it would reverse into “I want to die”….
 
Hajime had so much tears flowing out.
 
I told him, “No you have to live much much more.”
 
Hajime shook his head no to that.
It was sad……
Truly sad………
But at where he is in his disease, I though it can’t be helped.
My husband and I couldn’t stop crying at Hajime’s bed side.
We felt so sorry for him, so sorry for him.
 
Please pray, for his feelings, for him to get better.
 
 
Translated by Christine Shirota

Insterting a tube at Hajime's Lung

Hajime's condition was changed to be very bad though it was relatively
good till yesterday.

Without a sleep we had this morning. Hajime felt so hot and troubled.
So we tried to cool his heated body down by water with ice and so on.
Maybe because he had fever a little bit. As he got fever everyday and
bad colour of secretion had him take an examination. The result told
us he was infected to something. So, Hajime was prescribed to have
some anti-biotics.

This morning, we had OT/PT visit, and Hajime had a practice to stand
up and walk. He could move very smooth!

But soon after that practice, Hajime felt difficult to breath, so
prepared to lay him down on the bed. We let him take rest on the bed
as soon as the preparation was done.

Hajime's condition got worse, and told us that he has a pain around
his lung. Around 2PM, doctors came to his room all at once, and he
told us his lung problem. They told us Hajime has a small hole in his
right lung. This caused air leaking that makes his right lung became
small and disfunction. They also told us it needed a minor surgery.
While we were talking, Hajime had a significant pain in his lung, and
it let an emergency operation to be done.

A tube was inserted to his right lung with around 1/3 inch of hole.
This tube would function to draw the air from the lung. And adjust the
size of his both left and right of lung to the same. After that, this
tube will be withdrawn.  Yet... it will take another few days to
recover.

Hajime's body has been worn-out... I cannot see him like that. Feeling
so sorry and pity... He could not take ventilator out in the end,
today.

Discharge from the hospital has been put off day by day. I pray for
him being able to accept the reality going against from his hope.

Hajime, let's get better soon and go home together!!


(Translated by Satoko Okamoto)

He Was Able To Watch TV~!

Today is the 5th day since he’s been hospitalized.
At first I thought, “He’s going to be hospitalized for that long?”
But it went by quickly and we’re almost at the start of next week.
Hajime is recovering at the same rate as the days go by.
 
Today we took the ventilator off at an earlier time
than the day before and he breathed on his own till it was quite late.
 
However there’s dark colored drainage coming out of where the tracheotomy was done.
 It may be some sort of infection. The lab results should be back by tomorrow.
It may be because of that, he’s coughing and has a runny nose and I’m a little concerned
 but I’m hoping that he will get better while he’s in the hospital.
 
During the day, to let him have his wish of, “It’s been a while, I want to watch TV~”,
we watched TV. Up until now we were in no state to watch TV, but now we can.
 It made me happy to think about that. It’s Hajime’s favorite, History Channel.
The programs are about American History.
 
Today’s progress was this, TV viewing.
 
And again, today we had many visitors and Hajime looked very happy.
I thought that he is truly a loved child.
Even though he can’t speak, he has a silent conversation by looking at the person’s eyes.
How do I say, his eyes were very pure and shining.
 
It made me think that words follow from behind.
That it’s the heart that counts.
Don’t you think that’s wonderful?
 
And, and then we were moved to a different room at a late time today.
,,,well, but of course we’re still in an ICU.
The room that we were moved to is a little small and I felt bad for Hajime
that he will have to practice standing and walking in here.
But more than that, I hope he’ll be able to move to a general hospital room soon.
 
It would be so great if he recovers day by day and is able to go back to high school as a junior.
If he could see everybody……….
 

Translated by Christine Shirota

The Power of a Smile

Today, just like yesterday, he had his ventilator off and spent the day time without it.
But he had some symptoms of a cold and started to have a fever.
We cooled his body down with an ice pack and he took some fever reducer
and his fever gradually went down.
 
It maybe because it was Saturday, that the hospital was quieter than usual.
Regardless, the doctor came to the room for a brief moment.
The doctor came and said that because Hajime’s oxygen level is good,
 he is considering taking him off the ventilator during the day time starting from tomorrow.
 
 I asked him the question, “What about night time?”
 He said it as if it’s a matter of fact, “It is necessary”…
Just as I thought, from now on he must have the ventilator on at night.
 
Ever since Hajime’s been hospitalized through the ER,
his expression has changed greatly. I think the disease is progressing
much more than we can imagine.
Even then, Hajime thinks for us and smiles for us. He is worrying about me and how I feel,
so he calls me over to hold my hand and smile.
That effect is tremendous. I really get healed.
The power of a smile is great!
 
I guess even we are starting to show signs of exhaustion.
I want go home with Hajime ASAP.
 
 
Translated by Christine Shirota

Took off the Ventilator

To everybody,
Thank you for daily praying and giving us words of encouragement.
Because of everybody’s support, Hajime is recovering day by day.

Today, Hajime gave his total effort with tears streaming down his cheek again.
In the morning, it was decided to take off the Ventilator and starting at 9:30am, we took him off. But because of the tracheostomy, his coughing wouldn’t stop and he coughed for over 40 minutes. It looked like he was having a tough time and for a moment we were restless, but after that he was able to relax and his coughing had stopped. From now on he needs to have the Ventilator on at night.
When we’re going home, there’s going to be a home check to see if there is space to have and attach the Ventilator. It’s something that protects life,
so it’s a very important process.

Afterwards, in the afternoon he practiced standing and sitting on a chair.
Hajime is still in pain from the surgery and he cried uncontrollably.
But because he had lost his voice, he can’t let out any loud sounds to let us know.
He was rolling out large tears and letting out his inaudible cry.
I couldn’t help but to cry because it hurt me so to watch my poor child.

But he went through with it.
I thought, “That’s Hajime.”
My tears are coming out even now as I am recalling.

We try many things daily, but he is really giving all his effort.
Because he wants to go home as soon as possible…..

Hajime presently doesn’t like the word, “gambare”.
(It’s a word of encouragement that has meanings such as
“give it your best, try hard, hang in there”.)

But, “Gambare~~!”


Translated by Christine Shirota (American English)

Third Day in the ICU

To Everybody,
Thank you for the many encouragements and prayers that you’ve given for Hajime.
 
It has already been 3 days since he’s been admitted into the ICU.
Hajime is still on a ventilator.
His breathing is still too weak to take it off.
 
He’s been hospitalized this time because on Tuesday night he couldn’t breathe and for a time was in a very dangerous state.
But luckily, because we were at a different location in the hospital we were able to get him treated at the ER quickly and his life was saved. I am really glad.
 
The next day we couldn’t decide whether or not to have the operation, but because my son woke up past noon and he agreed to have it done, he had the operation a few hours later.
However, because of this surgery, my son had lost his voice.
There are many different types of tracheotomy tubes, but the one Hajime has is the type without the function to let him use his voice. They are going to watch and see how he does post surgery and consider if he could switch to a different type.
 
Yesterday he practiced sitting as a part of practicing to get up. It’s only been 2 days since the surgery, and it seemed like he had pain in the operated area so an hour was the maximum he could do.
His neck muscle had weakened very much and it seemed like he was having a tough time trying to get his posture upright.
 
Today, he will practice walking. He’s been spending a few days in the bed so I am worried that his muscles had weakened. But he wants to walk so I’m thinking it would be good for him to have some change.
 
It seems like he has to stay here for awhile. He’s really depressed about this.
Because he has no voice, his lips just move…
“I want to go home,” and tears were falling.
 
I am praying that Hajime would be able to leave the hospital ASAP, for Hajime’s sake also.
 
 
 
Translated by Christine Shirota