Using His Foot Skillfully

Lately, Hajime is constantly using his iPad.
Out of it all, he is most frequently on Facebook and YouTube.
He skillfully taps the keyboard with his toes.

Today, I got to the hospital late, but when I opened my FB during the day, Hajime was online.
So I sent him a chat without giving it any thought, “hello~”
But I didn’t get anything right away.
I thought, aw~ he probably got off already, but past 3 o’clock I got a reply from Hajime.

“Hello-Mom! Where are you now?”

That message came back.
I was so moved.
I was thinking that I’ll never receive texts or messages, but I was able to see that again.
I thought, Wo~w! He can’t move his body the way he wants to but Hajime sends me a message using his foot. I was deeply touched!

And to his father, he called him using Facetime.
His father was on a phone conference so he couldn’t get it, but overjoyed from the fact that Hajime called.

And today, there was a huge tv and Xbox in Hajime’s room. Hajime can’t do it so I guess it was there for him to see others playing. But I let Hajime use it. He plays it with his foot of course.
He was playing it with his toe! Wo~w!
I was thinking that he would never be able to play again.
Hajime seemed very happy being able to do many things with his foot. It’s the best to be able to think and try different things.

He’s going to practice with his foot!


Translated by CS

Even Dreamed about...

Today, Hajime was not really well.

Last night he had such a thing like this...

A CNA was called from Hajime asking changing his bathrobe. But it was
not dirty at all. The CNA believed Hajime saying the robe was wet, so,
came to make sure if it was fine, and the robe was clean and not wet.
Maybe he dreamed of dirty robe.

How pity... The feeling of having had the dirty robe came even into his
dream. I remembered when I saw him not being able to had a clean one
during weekends by nurses, and confirmed it influences his heart. I
really want the hospital to reconsider the care to patients by nurses.

At today's Physical Therapy, Hajime did not want to go out and just sat
on the wheelchair. But maybe because I was so tired, I could not make
him get up well. When I moved his body, it seems like his muscle around
right butt was tugged and a bit painful. I could not pull him to the
edge of the bed with pulling sheets. So it seemed Hajime was a little
difficult to stand up. I felt so bad about myself because of this. But
Hajime tried to make me smile shaking his body. Well, we cannot see
which is encouraged!

But I was healed a lot by his kindness...

Hajime looked so anxious when we went back home. Both of us came home
because we have to give our old apartment key finally. But I am worrying
Hajime as he was not really cheerful.


Translated by STK

Suction every 2 hours at night.

He received the Botox treatment at Kaiser.
This time, I guess he received the injections in more places and he said that it hurt very much.
I heard that it takes about 1 to 2 weeks for the effect to show, I’m hoping it works.
But the effect only lasts for three months, so he has to get it again in another 3 months.

We returned to the hospital at around 3 o’clock, afterwards he spent his time comfortably talking with his brother Ryo.

I heard something a little bothersome,,,,,
An ALS patient, whose disease has progressed as far as Hajime, needs suction every 2 hours at night. Currently, Hajime is taking sleep medication because he can’t sleep, if he has to wake up every 2 hours on top of that, it’s a huge problem. His disease might have progressed further than we are thinking.

Realistically, I noticed this because the alarm went off, but the Oxygen level went below 90 in the middle of the night. But Hajime was sound asleep. I rushed to suction it out, but because it was so thick I couldn’t get it out right away. Hajime woke up because he was startled by the suctioning, but to have so much mucus without him even noticing, I thought that’s really dangerous.

It made me realize again that suctioning every 2 hours is really necessary.

Hajime has a tremendous amount of saliva excretions and it just increases.
I’m sure there will be more instances close to suffocation because of this. I really have to be vigilant of this.

The order of mentioning of things has reversed, but I had a talk with Hajime about his anxieties towards this disease.
He said, “Why did I have to get this disease” as he cried.
“How do I communicate with my friends outside?”
And
“My life is boring,,,” He also said that.
He can’t find joy in life,,,he said that as he cried.

What can I tell hajime,,,,
I was only able to tell him, “We’ll get through this together!”
The amount of suffering that he has, there must be so much fear that I can’t even imagine overwhelming him every day.

Watching him cry made me cry again.


Translated by CS

Finally we got the eye system!

The eye system we have longed so much has finally arrived to our home.

It will be attached to tobii (the speaking device) which Hajime has.
It has been rejected so long time because Hajime could use his right
hand. When Hajime was hospitalized, we informed that his arm muscles
were already weak too much, but still it was rejected to be installed.

But finally, the eye system was approved and arrived to our home!

We used it as soon as it arrived.
A table for a person on the bed was attached, but it was too low to
use it as we wanted. And the system was also very difficult to make a
setting the height of eyes point.

But all the installation went well, so we will think another way to
try. Anyway, we are so happy that the eye system came to us!

Also we had two visitor groups.

First one was Ptricia, Hajime's school mate.

The other was the Noel family who got to know about us by Rafu Shimpo
article. They have thought of something they could do and brought us
dinner! We really thank you!

Hajime seems so happy having visitors. I guess he can only watch TV,
and we were so busy with moving to the new apartment and not being
able to be with him all the time, so he must feel alone. So, if there
are someone who can visit Hajime, please come to see him.

Translated by STK

Psychiatrist

There was some construction work that had to be done on the windows of our new place and we couldn’t get to the hospital till quite late in the afternoon but Hajime wasn’t so lonely because he had some visitors.

Hajime’s best friend Chris came again. Chris plays football and baseball so he couldn’t find the time, but he came the far distance and was showing pictures of the choir tour. Hajime was really happy and I was glad and comforted!

I was actually very worried because we came very late today.

But the thing that caught my attention as soon as I got there was how soiled he was from the excretions.

The gown was dirty, hard and crusty, and around the trach was dirty from the excretions too. He wants to change but because he can’t speak, he can’t say so. I think it’s a problem that they leave a patient like that. When I told the nurse, the nurse said something unreasonable like, “I thought I could do it when you or his father comes.”
The sheets were dirty from the night before when the nurse spilled some nutrition on it, but even that was not changed and left in a dirty state.

I think it’s a huge problem that they can’t clean the patient or the room if we’re not there.
Moreover, Hajime can’t speak and he can’t get the communication board, a paper with the alphabets either. I had a chance to talk to the psychiatrist about this so I did.

This psychiatrist, Dr. Lee is a doctor that cares for Hajime’s heart and he comes to check Hajime almost daily. He spends his time trying to help Hajime open up his heart, and he is a great doctor, but I think it’s going to take some more time for Hajime to open up his heart.
This doctor cooperates with us and asks about the concerns so that Hajime can spend the day comfortably. I’m hoping that this will help Hajime to spend day by day without problems even if it helps just a little.

And today, we tried leaving the catheter inside to suction out the saliva.
Hajime has a tremendous amount of saliva so we had to suction it out every few minutes.
But it would automatically be done so it was great for us both. But maybe because the suctioning power was too strong and it sucked on his gums and inner cheeks, he felt pain.
It would be great if there was some other way that works, but we have an appointment to get botox on Monday, so I hope that works.


Translated by CS

So sad...

I go to the hospital after children's school, so had some time in the
afternoon, after the long time. So I unpacked the carton boxes after
moving, and arranging things.

After a while, I sat down before the PC and saw Hajime's picture on
FB. When Hajime was fully fine, his smile was filled with hope.

Until now, why I was not crying this much and being able to be strong,
I even wondered myself, but this time, could not stop crying. Crying,
crying, and even with raising my voice... Why our Lord gave him this
experience, I was saying...

Well, I understood in my head, because we got a lot from the
experience God had given us. I always thank God.

But today, I cried over saying "why?"

In the afternoon, I picked up Yuki and went to Hospital to see Hajime.
Hajime gave really good smile. Maybe because Papa did the care instead
of nurses, very hard. Anyhow, it seems it's better for him being
taking care by his family.

This evening, we had the regular trach tube exchange. Today, it was my
turn to pull off the tube and papa was to put the new one. I was so
nervous... The RT was the different person from the last time, so the
way and order was different... we had a lot of hassle while we were
doing it.

The cuff of trach for Hajime has to be shrunk at first. Usually it is
inflated to stop his saliva because his saliva is more than usual. So
when we exchange the trach, we have to shrink it. Soon we did it, his
mouth was filled with bubble and saliva, so we aspirate the saliva
with the suction machine.

And we took of the ventilator and pulled off the trach. I felt
something was hocked, but I had to pull it of at once. I did it, but
it was scarcely...

Well, but the most troubled one was Hajime. He had very red face and
had difficult time. He was saying "I want this no more..." with his
mouth.

He cannot make his arms and legs move as he wants. Just watching TV...
In this situation, he has to suffer like this. This confirmed me he
has been through such a difficult time... Doing best, more and more...

But today we had a good news. We got to know a study team in
Northwestern University discovered the mechanism of ALS. To know why
and new medicine, this will not be too far, I hope.

I will put it on my article later.

Today was difficult day for him again, but he did his best, again.


Translated by STK

School Starts

I think about how badly Hajime wants to go to school too. After we go home we are starting home school, but I am hoping that he’ll find something to enjoy about home schooling.

We have to change our schedule to come to the hospital. We take turns staying over, the one that goes home will be taking the kids to school and after pick up go to the hospital. So that’ll be about 4pm. Until then, the one that’s at the hospital has to do everything alone.

For several days now, we’ve been caring for Hajime by ourselves as a part of our training, so we’ve been very busy.

The morning medicines, 3 times daily feedings, suction, restroom, showering, physical therapy (moving him to the wheelchair and setting the artificial ventilator, etc.).

We do this till a little past noon so we are quite busy!
Today was tough too.

For some days now, Hajime’s been having an itchy forehead, and we’ve been putting medication on. If we don’t it starts to become dry and scaly. But because he’ll be cleaner from the daily shower, I think it should gradually get better.

Hajime was crying today too.
He constantly said he’s scared.
When I ask him what he’s scared about. He answered, “In a lot of way…”
The daily weakening of his muscles…it’s beyond what anybody can imagine.
I should’ve been encouraging him, but instead I just cried.
I’m sorry, Hajime.

Next Monday, we will be taking an ambulance to another hospital to get Botox.
I hope this time it works.


Translated by CS

The Real Happiness

My heart is with full of passion now.

I was such a happy mother bore Hajime.
When I think of that, I cannot stop fears falling down from my eyes.

This happiness must be given because I am with our Lord.
I must feel the greatest happiness now.
How graceful I am seeing my son in my life! How happy!

Hajime is such a kind son.
He always supports me. Smiles to me.

Thank you always for everything.

Having Hajime's sleeping face besides me, I taste the greatest happiness now.
Thank God to the passion inside of me and tears from my eyes...


Translated by STK

Cannot sleep well...

In this few days, we are late going to the hospital. And additionally,
we will be later because tomorrow, Ryo and Yuki's schools are
starting. We will go to the hospital after picking them up. One of us
stay at the hospital in rotation every night. It sometimes troubles
doing trainings. We are doing it so hard for Hajime's discharge.

Today, we arrived after the noon, and we found out Steve brought a
picture. He explained to Hajime a lot, and we were really happy. Next,
Sue has come. For Hajime, they are his very great friends!

But... he seemed little bit exhausted and having a fever. As I
worried, he could not sleep well last night. In this few days, we
could not sometimes stay overnight, and comes around afternoon. So
Hajime missed as so much, it sounded like. Sometimes he wants to be
alone, but sometimes he thinks too much about his disease when he is
alone... I guess.

Me and my husband both are not really well these days. We have big
days, so cannot help it. So, recently we went back to our home to
sleep... It is very hard to be at hospital 3 months... honestly.

Go go, Papa and me!

Anyway, not about us, Hajime had Physical Therapy while Sue was here,
and went out with the wheelchair. It is precious for him being with
his favorite Sue. It heals us when we see them talking with smiles.

After that he went back to his bed and enjoying time with his younger
brother, Ryo. They are so good brothers. Ryo knows his elder brother's
preference, so they watched Youtube and had a fun with conversation.

They are going to school from tomorrow. So it is sad for farewell, but
tomorrow, they are going to meet again.

Hajime is already in a dream because he could not sleep well last
night, he went to sleep earlier. What dream he has?

Oh yes, Hajime gained weight around 5kg! Now he is 44kg! I am so glad!
They will increase the nutrition a little bit. I am so happy seeing a
little bit rounded face of Hajime!


Translated by STK

A camera from the trach

Today, the first thing we did in the morning was an examination done by inserting a camera into the trach. We were there too.

Because it’s done in the hospital room, we moved everything in the room and we were all ready! In the room there were 2 doctors, 2 RTs, 2 nurses and 3 students.



Before they started they injected some anesthetic and into the trach they put a thin camera way down.
This examination was done to check if there’s any fluid in his lung, but that seemed fine. Next they checked for any damaged around the skin where the trach is.
But when they inserted the camera from his nose, there was so much discharge that we could barely see anything.
They were suctioning along with the camera but because there was so much, they couldn’t get it all and that resulted in us not being able to see in details, but there seems to be no damage to the skin around the vocal cord and trach.

Hajime couldn’t fall asleep with the anesthesia and was getting the procedure done with his whole body trembling.
I can’t help but cry when I watch my son like this.
There are many medical personnel surrounding my son and doing a procedure, watching that…I felt a tremendous amount of fear.

If it happens, I thought I would request to sustain his life, but when I watch my son like this, I feel so bad for him that it made me think whether or not that is the best thing to do for my son.


Translated by CS

Good face again, today.

Hajime had a good face again, today. Maybe he could have enough sleep,
as he was sleeping until 9AM.

In the morning, he took shower around 9:30. RT and CNA today were whom
he already got used to, so he could have shower without problems.

At that time, the RT said "When Hajime came here the first time, I
helped you taking shower, but your body did not move like this!"
Indeed!

While Hajime was at Kaiser, as he also had pains from operation scars,
it needed a lot of sensitive care, so we could not make him move so
much. However in this hospital has a lot of activities like taking
showers. So, Hajime can even turn over by his own legs. How great the
rehabilitation is!

Well, it's been 3 weeks moving to this hospital. We need to keep this
situation. So, somehow we should manage to take him shower, we think.
We can put a special chair for Hajime... but how can we move him to
there?? This and that, there are so many things we have to think
before Hajime comes back home!

After the shwer, we had nothing for a while and had a speech therapy
session around 11 AM. Eye gage has not arrived yet. The therapist said
inquiries to the office would be made soon. So, today, she asked him
if Hajime has something to talk to, and brushing teeth. Done!


Today, we did not have Physical Therapy. We thought of going out with
wheelchairs around 11AM... Could we do it ourselves, because our
trainings were already done? Anyway, I don't know, so I will ask about
it tomorrow.

In the afternoon, my husband and I went to IKEA at Costa Mesa for
shopping and looking around some for Hajime. It is close to the
Hospital, so it is very convenient. Anyway, IKEA is so big. It took
so long time to look around the shop. After we finished what we should
do, and rush back to the hospital.

Meeting appointment with the doctor was postponed because the in
charge doctor was sick. Although it was very important meeting and my
husband finished his work earlier to be here on time, it was announced
only about an hour before the time. It had to be announced in the
morning... we could not help.

I worry Hajime's infection. The secretion has some bad colour and a
little bit smells. He is fine now but we worry about him having fever
soon..


Translated by Satoko Okamoto

Feeling Lonely and Helpless

Because we’re always moving this month, we can’t be with Hajime on the weekend, which is the primary reason.
---So we arrived to the hospital late because of the moving again.

When I’m packing/unpacking things, I find Hajime’s previous drawings and school work and every time I see it I tear up. This is how he used to write---And my hand stops.

We’re almost done moving. But there seems to be an endless amount of things that we have to move. I have to sort these things out and take it to donation.

I was a little late and was worried but Hajime was hanging in there. But it seems that he was feeling very lonely and helpless.
Last night, after we went home, I think he cried a lot out of loneliness because there were tear streaks on his cheeks.
I asked, “Did you cry?”
He answered, “Yes.”
He was very adamant Friday night, when he told us, “I want to be by myself” and sent us home.
But it is lonely to be alone, isn’t it?

We spent most of our weekend moving and I am really sorry for making Hajime feel this way.
This is our last week! We have to make sure we finish moving.

Hajime is in a very stable condition.
He still has a lot of saliva, but I think it’s a little better than before.

I am hoping that he will stay like this, healthy without any infections.


Translated by CS

Difficult reaction of RT

Although we came to the hospital in the afternoon, Hajime had a soft
face saying "I could sleep very well."

This morning, Marilynne, Allison and Cathie seemed to visit the
hospital. Hajime talked about it full of joy. Thank you everyone!

Soon after the arrival to Hajime's room, we noticed the setting of
ventilator was wrong. So we went to the therapist of ventilator to
inform this. However, the RT today did not have any ears to listen to
us pointing the mistake. "I just listen to the order from the doctor"
and saying he never listened to the others.

Hajime's oxygen level usually fixed to 30, but the order was less than
that. So, the setting was 24, and Hajime had insufficient oxygen.
After that, the doctor came with apology and said he would change the
order.

The similar thing happened around 3 weeks ago. We had a talk with the
other RT, but it happened again. Why it had to happen, we wonder.

Another problem happened with an RT in the night. As the shift is
changed, the other female RT came for the tracheotomy tube care. She
asked for having suction. But Hajime may not feel like it, so he was
shaking his head saying no. Yet, she pushed strong and did the
secretion suction. Because he cannot talk, she does what SHE WANTS
regardless of his will. It's bad. Because of her strong therapy,
Hajime dislikes her, it seems.

Why weekends are like that?

We will move to the new house, so we are back to the house to move our
packages thanks to the arrange of Joan.

I am an anxious mother again worrying if Hajime is fine...


Translated by Satoko Okamoto

Exchanging the Trach Tube Ourselves

Last night, Hajime slept rather well. But he seemed very sleepy from morning today. ---Actually, he was sleeping. He was sleeping so well that all the appointments that he had in the morning did not happen.

He had speech therapy at 9:30am, but the therapist did not come. Plus, the shower that was supposed to come at 9:30 did not come and the physical therapy at 10am was changed to a later time because Hajime was sleeping and to the CNA that came to ask about the shower, we told them, later and he was sleeping until 11:30am.

As a continuation of yesterday, this morning, I injected a shot called Heparin, which is a medication to prevent bed sores.

Hajime was sleeping, but surprisingly, I was able to give him the shot without waking him up. I asked Hajime about it later and he said, “When did you do it?” Yeah~!

After he woke up, he kept watching the “Space battleship Yamato” DVD. I am truly thankful for aizmon, who sent me the DVD as soon as she read my blog. I want to show Hajime’s grin.

So the speech therapy happened at 2pm and the physical therapy at a little past 2:30pm. The afternoon became very busy after the schedule changed.

For physical therapy, the ventilator goes on the wheelchair, so we were explained by the RT about how to make it mobile.
After putting him on the wheelchair we went outside and enjoyed today’s awesome weather that we had again. The slight breeze felt really nice.
But because he had to use the restroom we returned to his room. After that we spent some time in the room with him on the wheelchair and continued watching the movie, “Yamato” again.

It was already dusk when he returned to his bed and the trach exchange that was supposed to happen, but delayed after delay finally happened past 7pm. Today my husband and I did it, but it was so scary!

Hajime was so nervous past the point that he had such a red face. Maybe because we were doing it, he was so nervous. My husband took off the tube and I put the new one in.

This time he didn’t bleed at all, it came off clean.

The tube that comes off is washed with soap so that it can be reused, sanitized with hot water and hang dried. The RT told us, “Good job!” so I was a little comforted.

Tonight was my husband’s turn to stay over but because Hajime said he wants to be alone, he told us to go home. So to respect Hajime’s wishes, although I didn’t want to, I went home with my husband.

Was he okay? I am very worried.


Translated by CS

Good feeling day

Today was the day having a lot of visitors.

Last night Hajime was caring about saliva, so could not fall in sleep
soon. But today, he felt so well, it seemed. So even nurses ware
surprised.

From last night, I was doing medications instead of nurses. When I was
doing injections, Hajime had a fearful face, but had a smile feeling
well after that.

Today, at the physical therapy, Mark helped us pushing the wheelchair
and we could hear the good conversation from the patio - well, it was
only Mark's voice though.

Speech therapy after that, Hajime was having smily face, too.

After the lunchtime, Mr. Stu who made his dream come true visited
Hajime. He still helps us. He is a real angel! He takes care about the
home care nurse stuff after he is discharged, about a car, and the
wheelchair... He really does his great work for Hajime. I am really
grateful for meeting him.

Around that time, Hajime's 3 High School friends came to see him
Danny, Alex and Kevin. Their smiles was really the best I remember.
Hajime was using his foot fingers to point the communication board to
have conversation with them. Danny is a son of our beloved Joan. He is
alike his mother, very good person.

After that my the very best friends came to see us. Mariko and Noriko.
They are also Christians and we have been friends for ages. They took
their children, so Yuki seemed have fun playing with them. Let them
play at the hospital garden, we could talk freely. It was so fun.

Everyone, thank you very much for visiting us from the far!

I am really thankful to the friends helping our family!


Translated by Satoko Okamoto

Thank you for being born!

We had the respirator training at the new house today. It was about an hour and a half of lecture, but I was a little nervous. I was already worrying in my heart, “When I have to use it, would I be able to do it?” But whatever it is, I have to give it all for Hajime!

Just like that we didn’t have time in the morning and we got to the hospital close to 3pm and we have physical therapy right away.

It was a review of yesterday, to put Hajime on a wheel chair using a lift and my husband did the whole thing through by himself. I held the ambulatory bag. We were both told “Good job!” and reassured.

Afterwards, we took a stroll!
It was really hot in OC too so I thought Hajime can only spend a little time outside but he stuck it out there fairly well. A little while later we went inside the air conditioned hospital and spent a little time there on his wheel chair.

During that time Hajime talked a little with his dad. They were talking about the mobility that he has left. Out of it all, the thing that shocked me was the fact that it’s getting difficult for him to open and close his mouth. It reminded me that the disease does not know to stop and it’s progressing at a very high speed.

I talked a little about this with Hajime. Hajime said that he’s “scared”. He said that his body gradually losing its mobility, that fact alone is very scary. When I think that in a little while we can’t even have a conversation with his mouth, it’s very difficult.

Hajime is fearful about how his whole body will be losing its mobility, but I talked with him about when that happens we could think together about what Hajime’s happiness is.

At night the family goes home and after that Hajime says that he’s “lonely”. I think that it must be noisy and annoying when the whole family is at the hospital, but I guess it’s a time of happiness for Hajime. Looking at Hajime with a very nice expression, I said,

“Thank you for being born.”

I really think that it’s the most fortunate thing to have a son like Hajime.
I told Hajime about that.
Hajime cried and cried. He probably has this feeling that,,, he’s burdening the family.
I told him… not even remotely.

If Hajime didn’t have this disease, would we have been able to feel such happiness?
It was a moment that I felt that God can bring us happiness at any time, no matter what.


Translated by CS

Finally Eye gage was approved!

The medicine Hajime newly started to reduce saliva seems working well.
Today, we did not care much about it. Until this, medicines for saliva
never worked, so we could become happier not only the medicine is
effective but there is some sort of meds working well.

At the physical therapy, we practiced again for the lift. Today, that
was my turn to carry him with the lift to settle him onto the
wheelchair. Papa was adjusting Hajime's breath by ambu bag. Our
corporation went well and had a good evaluation. But this lift makes
Hajime tired it seems, though.

After that, we had the regular weekly meeting. Hajime was on the
wheelchair, so he joined with us. It must have been a bit hard for
Hajime because he had to sit on a little long. But everyone welcomed
him, so it was good opportunity for him anyway.

The good result from today's meeting was... the eye gage system was
approved finally, which was not allowed how much ever we asked for.
With this, Hajime can communicate with people with blink his eyes, not
using hands and feet. Not only arms and hands, but legs and feet
weakened recently. We wondered why it was not approved till now. Even
we guessed the hospital decided never approving it. Anyway, it will
arrive to our house in this week. We look forward to it a lot.

In this joyful news, we also had a very sad news. It shaken both Papa
and me. In the system of the US, we the migrants have a lot of
problems. Treatment between citizens and us have a lot of difference.
We have to seriously consider about what we will do about this in the
future.


Translated by Satoko Okamoto

Lively Monday

Alas the beginning of a new week.
Monday is completely different from the weekend and it’s nice that it’s lively.
Maybe Hajime will feel better?

He started to take medication to suppress his saliva from last night, but there weren’t any noticeable difference.
The saliva that comes out of his mouth is deeply affected by Hajime’s feelings and the more he worries about it, the more comes out.
So I think I just have to observe it for awhile.

For today’s physical therapy, so that I could do it alone, the PT just supported his neck, the RT did only what’s related to his assisted breathing, and I tried my best to help Hajime sit on the wheel chair by myself. They rated me as, “Excellent!”…I gave it my best shot.
Practice makes perfect.

Today we took a stroll with the oxygen hanging on the wheelchair so it was easier.

Last time I pulled the oxygen with my right hand while I was controlling the wheel chair with my left hand. This was extremely difficult. We were swerving all over. The RT saw that, looked for it and brought it for us. So it was easy to push the wheelchair today.

OC is a pretty cool area, but it was hot toda~y. We went out for a stroll because Hajime wanted to, but we got drenched with sweat! “I want to go back…”And we headed right back into the area of the hospital where it’s air conditioned. Then we went back to his room, turned the fan on right away…He had the best, “Aw~ this feels so good!” face.
It made me laugh.

Right after that, he showered, and luckily the pair that came to help was the two that talks to him about the games that he’s very much interested so he didn’t complain of any pain. Like I thought, the comfort of getting help from somebody that he feels open to is great. I thought, a trusting relationship is very important.

Today, past noon time, Ikurin and Cynthia brought us lunch. I am so grateful for them all the time.
I am a very blessed person to have a friend who tells me, “Call me right away if anything happens.”

Around dusk, Akira and Acchan brought me dinner. I was happy that I had a fun conversation that I longed to have with them. Everybody, thank you so much for putting my feelings first!

And, and…
Lydia, Bryan and Wesley, friends from Pasadena came to visit Hajime.
Thank you for coming from such a far place.

(picture)

But the happiest was that our family that couldn’t come yesterday came today. It was the moment Hajime was waiting for! I strongly felt that the happiness that God gives is actually in a very close place. We’re very blessed to be able to feel that. God, thank you for always!


Translated by CS

Sunday only two of us

Since Hajime was hospitalized, I was alone spending time with Hajime.
Dad, Ryo and Yuki did not come, so it was calmer than usual.

For Hajime, it was very sad for not being able to spend time with his
family as he expected. ... So, I will stay at his room tonight.

This morning, for letting him take shower, a CNA never seen came to
help Hajime. Hajime was scared his appearance, but he was good person
though a little bit missing something. He set his hand when he washed,
cared his neck and so on.

We did not have anything special other than that. It was good slow day.

I talked to the doctor about Botox treatment he had while he was at
Kaiser hospital. In this few days, he had to have suction every 5
minutes. It was about 3months ago he had it. We thought it did not
work, so we never cared about it. But when we wonder why his saliva
suddenly increased, we came to the idea that Botox was working,
because we heard it worked for 3months and just 3months has passed.
So, I asked him if Hajime could have Botox again. Sadly this hospital
could not make it. But alternatives would be tried. The doctor
prescribed a medicine to suppress Hajime's saliva. He can take it from
tonight. I hope it works well.

Hajime loves "Space battleship Yamato." He watches DVD of live-active
version of Takuya Kimura (Kimu Taku) soooooooooo much. Even now he is
focus on watching it. This DVD was a gift from Granpa and Granma in
Tajimi, Japan. He loves it so much! Thank you for your gift!!

His best fun is watching movies and TVs. If you have any DVDs of
"Space battleship Yamato," please send it to us.


Translated by Satoko Okamoto

Increasing Saliva

Today, because of our moving related things, we went to the hospital late again.
I was worried because it was a Saturday, but he was okay.

I guess Hajime was feeling lonely because he was happy that the whole family went rather rambunctiously.
His sister Yuki was talking about her brother and was saying that she wants to go home together with her brother. When I told Hajime about that he cried big tears.
Because he can’t reach out with his hands he used his foot and waved at Yuki. Yuki grabbed his big toe and looked really happy.

As far as Hajime’s condition, his control of his saliva is decreasing and he needs suction once every 5 minutes. He had botox in his mouth a while back but it didn’t work. But now that I am thinking, “Maybe it did work.” Because it’s supposed to wear off in August and it is August and his saliva is increasing. I am thinking about consulting with his doctor about this.

When there’s an increase in saliva, Hajime has difficulty breathing, so he gets a suction every time and waits to recover.

As worried that he gets, his saliva increases along with it.
I am worried…..

Translated by CS

We had something to consider...

Today, Hajime felt asleep after shower in the morning, PT was fixed to
the afternoon.

After the noon, we had a session exchanging his tracheotomy tube. It
was a while since last time, he was bleeding a bit a lot. Last time,
we did not really mind it when we saw the exchange, but this time was
different. If we change it frequently, the amount is less, we heard.
Hajime must be afraid a lot, too. This hospital usually exchange it
once a week. But the size of tube he puts is 8, though the stock of
the hospital is either 6 or 7. This hospital is for children, they
have smaller size. Therefore, they needed to order the tube, so it
took a while. Anyway, it was good to exchange. Next time, we have to
do it. When we think about it, we feel very nervous. If we can do? It
makes us worry.

After the exchange, he had the physical therapy, so Hajime must have
been very nervous, I thought. But he did very good, without complaint.
It is very great, I think. As usual, he went out sitting on the
wheelchair. It seems he is so happy going outside. And he said he
wants to go to the cafeteria. The place is the one we always taking
meal, and nothing special, though. And we came back to his room.

Recently it is our job to let him sit on the wheelchair. It is harder
than we thought. Hajime is very light now, so it must be fine, we
thought. But in the reality, it is very different, we feel everyday.
Well, we will get used to it anyway.

And today, we had something to consider very much. We had a talk with
the doctor talking about the Hajime's future. He talked what no one
talked or could not talk, very considerably. It was "if Hajime's got
something, do family wants him to be at home or at a hospital." When
we got the question we have never thought about, we had to consider a
lot. But I want him to live longer, and have treatment for it, thus
it would be better for him to stay at a hospital, maybe. The doctor
said we do not feel guilty as parents that we cannot let him stay at
home, though there are some parents never let their children go to a
hospital but stay at home. It was something we have never thought of.
But we have to consider that, we thought.

It was very good time to get a trigger to start considering.

If you are a parent having a child the same like Hajime, what would you do?


Translated by Satoko Okamoto

The Progressing Muscle Atrophy

Early in the morning today, he had blood work done.

Hajime’s weight dropped extremely. His weight was 87.5lb when he was transferred to this hospital. That’s 38.87kg. When he use to go to ALS clinic, he weighed 100lb. He’s losing too much weight so we decided to increase nutritional intake. They have been gradually increasing it but when they just weighed him recently, his weight had dropped again. The effect of increasing the nutrition intake is supposed to show in the blood, hence the blood test.

After the test, it was morning and he had physical therapy at 10AM. It’s an hour earlier than usual so Hajime couldn’t take a shower in the morning. Instead he had to take it past noon.

Yesterday, because we were late, Hajime couldn’t go outside. But because I was there today, he was able to go out on a wheel chair. It looked like he felt nice breathing the air outside. He sat longer than usual, which was one hour in his wheel chair. Wo~w!

Around 1:30PM he showered. He had a bit of a breathing problem and he couldn’t go the shower room, but there were no problems when he was showering. Right after he showered, my husband brought the kids.

The RT cared for his trach right after the shower. Hajime almost always trembles when somebody touches his trach. The trembling is to an extent that it worries me.

Recently, his leg muscles seem to have weakened and he doesn’t have much strength to stand. He starts shaking when his muscles weaken so I am thinking that the shaking of his legs is because his muscles are weakening.

The progression of his disease has not stopped and is progressing while being hospitalized. Not only can he not move his left arm, he can’t raise his right arm with his own strength anymore. He can’t grasp anything either. It’s a sad reality.

I have to face this, but a part of me just can’t. If I’m anxious, Hajime will also be anxious. That’s why I have to stand strong.

But it’s so~ hard!

Translated by CS

While we are not there

It became late to Hajime's hospital because of our moving to the new
apartment. We brought big furniture to the new place, so the goal must
be closer... I hope.

We arrived at the hospital around 2:30PM. When we reached to Hajime's
room, Mark was enjoying talking with Hajime.

They told us when Mark and Alice arrived at Hajime's room, the curtain
was closed. But the loud voice of a nurse even could heard from
outside shouted "Suction?" and they felt something strange. When they
opened the curtain, there was a nurse and had them outside saying
"Please get outside a moment" and Mark and Alice was waiting outside
over the curtain. Soon after, the tone calmer and changed even like a
different person.

When we are not there, the nurse terribly shouted to Hajime who could
not talk changed their tone calmer when the person got to know someone
was nearby... Isn't it terrible?

After hearing such a thing, we went to higher level nurse to talk
about the problem. Alice came together with us to talk about it.

While we are not there, we can say every time something was, is and
will be happened. It is too bad. Hajime has been upset a lot. If he
does not need to have this feeling, how relieved, we think.

But... it's just simply terrible, doing such bad things to a patient
cannot talk and move...

Our moving is finishing soon. We can take time for Hajime, as soon as
we finish.

So, let's be patient!


Translated by Satoko Okamoto

A God Given Gift of Moment

A smile finally appeared on Hajime’s face!

Today was my turn to take the kids with me to the hospital.

When we were on the freeway, my husband called.
“Where are you?”
“Around Beach Blvd.”
“Because Hajime’s asking, where’s mom?”
They were out taking a walk.
After a few minutes, I get another call.
“Where are you? Hajime wants to actually see you coming in.”
Hajime could only be out for several minutes, but he was eagerly waiting for me.

Right after we safely arrived at the hospital. Hajime seemed very happy looking towards our car.
I was so happy! That Hajime was waiting for me…
It was surreal.

Hajime even came to where we get off the car.
But the alarm went off so he went back to his room.
I thought that God gave us this one moment to us.
Thank you God!

Afterwards, Ikue brought Zen and came to see us.
This too made me very happy~.
It is so nice to know that everybody cares.
Thank you Ikurin!

And a home care worker came by to explain to us about caring after discharge.
If we could get this thing called the Medi-Cal, the government will pay for these services so we don’t have new bills to pay for and get service. We chose this hospital because they are excellent with follow up care. I hope we get it.

And today we bought Hajime a fan. Hajime seemingly enjoying the breeze had left it on the entire day. For us it was rather cold with the AC AND the fan.

But we were glad to see Hajime’s smile.
Thank you to everybody who was worried for him.


Translated by CS

Hajime had a red face

Since last night, Hajime felt so hot and got sweat a lot. Usually the
room window must not open, but as nurse said we opened it to have a
cool out side wind to sleep. So, a little bit hummed night.

This morning with his agreement, Hajime took a shower and freshened.
But not really fine.

Hajime felt he got infected something and told me. Me too, wonder if
he got infected judging from smell around his tracheotomy, the amount
of secretion was a bit more, and he felt hot.

We told the doctor, but he told us that the antibiotics he was taking
was still going on, so take 3 more days.

Story goes back and forth, we had a speech therapy after the shower.
And the therapist asked him how was his weekend, and his answer was
"not good." So the therapist asked why. Actually he had to answer by
using his feet, but I replied to it. :P

I told her about the problem we had about CNA on Saturday.

The speech therapist said it was so pity. After that, Hajime could
reply all the answer by using his feet. The questions were like his
birthday, and where his father was, at that moment, or what he was
doing. He got used to using his feet to point the alphabet, and moving
very smooth. However, we forget the alphabet he pointed before, while
he points the next alphabet.

We had the Physical Therapy next. Today Hajime was coughing a lot and
seems really difficult for him, but he went outside. Only a few
minutes he was out there, but later on, he was wandering around in the
hospital. Some twice or so, the alarm warning low battery of his
ventilator, but he did not have any problem with his breathing when he
came back. He could sit on the wheelchair for 30minutes, but more to
go.

After the PT, he was really tired. We do not know if it was because of
his infection, but he felt so hot and more secretion, so Hajime looked
very bad condition.

Last night, he had very red face and got sweat a lot. Was he fine
afterward? I face to PC with the thought of Hajime. Hoping to see his
fine face tomorrow.

Translated by Satoko Okamoto

He’s not doing so well

This morning we went to the new house again to pick out curtain fabrics and then we went to Hajime’s hospital.
 
We got to the hospital past noon, but Hajime wasn’t doing so well.
It seems that the same CNA from yesterday was here and Hajime stubbornly continued to ignore him.
So the nurse decided to change CNAs. He really didn’t want him as his nurse.
It’s understandable to not want a nurse that’s not trustworthy.
 
Maybe because of what happened, Hajime was feeling down.
Poor him…The weekend is the only time without physical therapy when he can leisurely spend his time,
but feeling down like that ruins it.
 
Perhaps because his physical condition is not too well, I’m worried about the infection again.
The smell from the last infection hasn’t gotten better either…
 
 
Translated by C.S.

The Problem During the Weekends

So many people came to our house today to help us pack and move things.

At the new apartment, our beloved Joan was there with a specialist,
about the curtains, plumbing, fixing different areas,
I just felt strongly that everybody is getting together as one and waiting for Hajime to come home.

Afterwards, we headed for the hospital.

As soon as we got there, I was surprised!
There were several pillows with wet covers under the bed.
And all these other areas were a mess and Hajime was sleeping in the midst of it.

A hospital is a place where it has to always be kept sanitary,
so it is really not okay for a room to be so dirty.
If Hajime’s trach get’s infected and he gets an infection again…
when I think about that I just can’t stop worrying……..

I called today’s CNA(certified nursing assistant) right away.
It was a boy that’s been recently hired,
but he didn’t show any signs of remorse when we pointed out what was wrong
and this CNA ended up quarreling with my husband.
Because they did this in front of Hajime, Hajime started crying and it was such a chaos.
It’s a CNA’s duty to take care of their patients, but all he had were excuses.

We called the charge nurse and had the CNA changed.
The CNA that came later was a female and did really well.
An unsanitary room and doing things that affects the patient’s well being can’t be dismissed.
Again, it was a moment that brought out the bad quality of this hospital.

After that, Hajime was nervous throughout the day and I felt sorry.
On Saturdays there aren’t as many employees and when a problem occurs,
there aren’t any people to handle it and we are really troubled by that.
We had problems last weekend too so I thought I have to talk with them about this more.

The most important thing is to not let Hajime get anxious! Right?


Translated by Christine Shirota

Today Was a Busy Day Too

Because we are in the midst of moving, we can’t sleep over at Hajime’s hospital yesterday and today,
but Hajime is hanging in there by himself.

We headed for the hospital early this morning too.
Hajime had a good expression.
When I asked, “Did you sleep okay?” He blinked “Yes!”

This blinking is becoming crucial to our conversation now.
Blinking once is a “yes” and if he shakes his head a little, that’s a “no”.
When he first lost his voice, having a conversation using blinks felt very awkward and I was overwhelmed with sadness.
But time has resolved that. Now we can have a pretty fun conversation.

Continued from yesterday, we had physical therapy training.
Today we tried using the lift machine that was used yesterday and
we were supposed to get pointers if there were anything wrong with what we’re doing.
We were told, “Good!” Yeah!
And we were taught how to tape him to ease his pain in his shoulder.
It didn’t seem like Hajime felt any difference.

Right after he had his speech therapy. But because he was sitting on his wheelchair,
he couldn’t practice what he usually does, which is pointing at the communication board with his foot.
In exchange, because it was such a nice weather out,
Hajime went out for a walk with his speech therapist on his wheel chair.
But the battery ran out on his ventilator so he had to come right back. Disappointing!

Afterwards he had visitors after visitors. It continued until late at night.
So many people came from places far away for Hajime.
Thank you for always supporting, everybody!

Mark has visited so many times.
Mark, Alice, thank you!

Translated by Christine Shirota

I want to hear you one more time...

It seemed he could sleep well last night. From 10AM, at the Physical
Therapy, we did how to let him sit on the wheelchair without help, by
one person.

Like the machine of this picture, place a mat below Hajime laying on
the bed, and hang him up automatically. Certainly we can do it by one
person, but isn't it something that we have this machine at home? The
hospital side thinks to install this to our house - even not the one
electrical.

But right now Hajime can use his legs, so it is better moving to the
wheelchair by his own without using the machine.

It took a while to let Hajime sit on the wheelchair since hanging him
up by the macine. So he slept as soon as he went back to bed.

In the afternoon, he had a speech therapy. From 1 ~ 15, he speaks. But
as he cannot have his voice out, it is just a mouth. Yet, still let
him move his mouth. The same to the alphabets. The tube of tracheotomy
is located on his throat, so he could not open his mouth a lot, but he
was doing his best.

A therapist asked him if he wanted to let his voice out. But he was
saying "no" clearly. He is afraid of being choked. A lot of fear he
has it seems, and he says he does not want to do.

Later on, I talked with him only two of us. I asked him to do as I
want to hear his voice again. But Hajime was shaking his head saying
no.

When I said "You know, I listen to the recorded voice on my cell phone
because I want to hear your voice," Hajime started crying with full of
tears. I knew again that he felt so sad of lost his voice. I could not
stop crying, either.

I told Hajime "Let's find the joy of life together!" and Hajime smiled
so soft and said "Yes!."

Hajime is really strong, and kind son. I am proud of bore a son, Hajime.


Translated by Satoko Okamoto

Muscles Are Rapidly Weakening

There was so much that happened today from morning again.

He showered.
He doesn’t like the way the nurse showers him and with his mouth he was complaining that it hurts,
but from the way I see it, perhaps because they are gradually getting used to Hajime’s body,
they’re being more thoughtful and I am starting to think that this showering might be really good.

Next it was the physical therapy, and just like yesterday he went outside on a wheelchair.
Today wasn’t as hot as yesterday and it was a very comfortable weather.
Hajime didn’t go around the hospital, instead he spent a few minutes on the patio around the entrance
and because he had saliva in his mouth, he went back in his room once to suction it out.
Afterwards, he went on the wheelchair again and went to different places in the hospital and returned back to his room.

After he returned to his room,
we were questioned by the case manager about the power of attorney that I had mentioned in my previous blog entry.
Hajime thought carefully, understood and responded.
He even answered clearly about after his death, something that he doesn’t want to think about.
Based upon these papers, somebody like a paralegal completed the official forms.
Whenever we’re with Hajime we have to carry the forms around with us.
But, I’m so glad it’s finally done.

Hajime can’t sign his signature anymore.
I just noticed this a few days ago when we had to get his immunization records and needed his signature.
At that time, my husband told me, “Hajime can’t hold a pen so you have to wrap it with a tape for him.”
I was shocked…….

I didn’t think that his disease progressed that much. I knew that his right hand had weakened, but.
I started to cry afterwards when I saw his name that he put so much effort into writing.

When I thought about how hard he tried to write, it broke my heart.

And again, today my husband told me that his legs have weakened much too.
I know that this disease progresses,
but it’s scary to actually see it happening.

What can we do now?
What can we help him do before he loses all mobility?

I thought that and I started to cry.


Translated by Christine Shirota

Took a walk around the hospital

When we arrived at the hospital today, Hajime was on the wheel chair.
He was on the Physical Therapy. So, we pushed his wheelchair and took
a walk around the hospital.

Today was really good weather, so Hajime looked feeling good. He got
sweat, while we took a walk, as he wanted. I felt happy because he
could adjust his body temperature to the one around.




However, while we were walking, his ventilator got low battery. And
while we checked it, the tube of ventilator was about to dislocate,
and Hajime could not breath. We had a big trouble and panic. Well, we
were alright anyway, though. Nurses were too sensitive, even Hajime
was surprised to it.

So after that he went back to his bed.

We had family meeting today at the hospital. Meeting was just by its
name, and it was just reporting from doctors, and we did not have any
right to speak up. Is this really a family meeting? I thought. I
thought of some questions and anxious point to raise.

When we back to Hajime's room, he looked so upset, and crying a lot.
He cannot get used to this hospital, simply, and saying "I want to go
back home" and cried again.

Tomorrow we will have "power of atony" reservation: this is to sign on
a document if something happened onto you, whether you want someone to
provide resuscitation or not, or do you want to donate your organ or
not. So we talked about the contents of questions.

Hajime sounded he thought his death was close, and listened to me with
a lot of tears. We could not talk without tears, neither.

His muscle is weakened one after another, so it is natural to think
like that. But I would like him to think he wants to live more.

It is so sensitive appointment, I wish Hajime would not hurt and it
goes smooth...


Translated by Satoko Okamoto

The Outside that He Missed For Two Months

Until I left last night, Hajime was very anxious, but today he was in a very good mood
and he was able to go out onto the patio on a wheelchair.

I was very happy when I saw this picture.
I started tearing.

Unfortunately, I couldn’t see it, but I guess it was a physical therapy sitting on the wheelchair for thirty minutes.
It’s been two months since Hajime felt the air outside,

…and I was told that he said, “It’s warm outside.”

I think it’s a big step forward that he felt that way.
“Yes, it was a very fine weather today and it was a hot day.”
There is no other happiness to be able to say this is there?
I was really happy~.

Hajime’s feelings are most important, after all.

Translated by Christine Shirota