Hajime’s condition

This is Hajime’s condition since then.

Lately, his blood pressure and heart rates rises around noon. 
We are giving a medication to lower his heart rates, which reduce stress on his heart. Other than that, he is spending his time without any problem.

Yet, since his eyes do not move, it is hard to tell if he could see or not, so using Brainfingers would be hard as well.

When he is crying, it is hard to tell if he is crying because he is in pain, or that he is crying because he feels down. We feel bad by not being able to understand why he is crying. 

Right now, Hajime is facing the difficulty of not being able to have communication with us. It seems that right now, he is trying his best to overcome this difficulty.  

Please continue to pray for Hajime. 


(translated by RA)

A message from God

Today I went to the church where I know the pastor really well. People at this church are all Japanese, and all are very warm. Everybody at this church prays for Hajime. Of course, many people, and people from different churches also are praying for him. It is so appreciating. Thank you very much. 

During the service, I felt God’s existence. He was standing by Hajime’s bed, and lifting Hajime up by putting His hands on Hajime’s back. Hajime’s face looked very refreshed and was just waking up. That scene was very warm, and orange light was pouring on. At that moment, I realized that it is alright to cry at God’s present. Then my tears welled up.  

Immediately, I noticed that next to Hajime, there is always God’s presence.
I felt that God is carrying forward Hajime’s life in the very best way. “Hajime is being led by God…” I felt that way. I myself was the one who was being surrounded by God’s comfort, and my heart was softened. 

Going to any direction would be fine! Because God is with us...

(translated by RA)

Sad Face

Every time I update Hajime's blog, I feel somewhat of an emptiness.

Hajime hasn't change in terms of having no movement of his eyes. The eyelids are always opened and his eyes are centered and still, and I'm seeing some redness and swelling in the white of the eyes. We keep applying Refresh to his eyes, but the problem persists.

His infection appears to have improved quite a bit, but we are concerned about the copious amount of secretions he has still.

Please take a look at the picture below.

Feeling At A Loss

Infection was found in Hajime's urinalysis, and he is starting to use antibiotics from today again.

I was told that I can stop giving eye drops to Hajime's eyes, and I stopped giving it to him from today, but he still has quite a bit of discharge with red eyes. His eye problem has gotten worse since his pneumonia. I'm hoping that he is going to get better as soon as possible.

Since operating Brainfingers requires quite a bit of effort from the user, Hajime is having more difficulty using it now. Hajime's eyes can hardly move now, so the Brainfingers interface is useful, but since the software analyzes “Strained” (“Focused”) and “Relaxed” state of the brainwaves, when Hajime is crying, feeling excited, or experiencing pain, it becomes more difficult to use it to have him express “Yes” and “No” clearly. I think I have to continue to work more diligently on this with him.

Hajime was crying today again with his face all red. It's not unreasonable, since he cannot see the television very well (it is unclear whether it is visible to him or not), and the nurse continues to administer his medicine and provide care in an indifferent manner. At times, I feel at ease with Hajime being at home and forget how important my conversation with Hajime is. And this is happening with all the members of our family. I now realize that rather than worrying about Hajime, I'm realizing that I need to place more importance on the conversation with Hajime.

I'm feeling at a loss.


(Translated by JK)

Feeling So Sad

Hajime yesterday had blood mixed in his urine which made me become worried about him, but it had returned to normal color today. It's different depending on the day. Since he uses a Foley catheter, it causes him to be more susceptible to infection. I'm concerned that it may be a result of infection this time also.

Aside from this, I've recently been noticing some smell from Hajime's tracheostomy site. The trach gauze itself also has some greenish discharge. Hajime's infection always begins like this, and I'm so worried.

Too many worries….

I have been strangely sad for several days. It is mortifying.
I cry in the background (away behind the head of the bed), whenever I watch Hajime's face with his eyes so motionless.

I have a vivid memory of Hajime when he was healthy. Then I tend to compare Hajime then and Hajime now. "Why did such a thing happen to Hajime?" And I become frustrated.
"He was perfectly healthy..." And I become sad.

I appear to be doing fine in public, but...

In truth, I try hard not to think too much. If I don't try to think about it, I end up crying everyday, and I can't be crying everyday, right?

Recently, I had not been able to talk to anyone about many of my concerns and also had not been able to go out since Hajime's recent hospitalization, this all has been making me feel more depressed.


(translated by JK)

All the Worries

Hajime has been doing quite well.

I was trying to discontinue Hajime's eye drop applications, but since Hajime developed bloodshot eyes, I could not stop. His moisture chamber application to his eyes are also being continued.
Unfortunately, his palliative care nurse has been out for the last few weeks, and it is uncertain when the nurse will be coming back. As a result, I have a lot of difficulties, having nobody to respond to many of the concerns that I have.

Today is the start of a new week, and I was looking forward to Hajime's blood test but found out that there is bloody dark colored urine output. Now, it is my concern that he might be experiencing dehydration once again. Hajime's sodium level has not been normal either. Hajime's hand is also edematic. I feel that there are a number of increasing worries and issues about Hajime.

Hajime hadn't been able to use his Brainfingers interface for a while, but we recently received a laptop from an individual who donated it to us. Hajime, then, started using Brainfinger again, and he enjoyed playing his favorite PongGame. Hajime also practiced expressing “Yes” or “No” with my encouragement, but he seems to tire quickly due to the fact that his eyes do not work as well as they used to. I want to work with him, with this exercise, little by little.

I'm attaching today's photo of Hajime here.





(translated by JK)

Settled at Home

Some time has passed since Hajime has been discharged from the hospital, and Hajime's condition is stable. Hajime's excretory system is not working well, and I am concerned about the dehydration. His blood pressure is a bit on the low side, and his heart rate is stable. I think Hajime is more stable at home than when he was in the hospital.

However, Hajime is now experiencing a total Locked-in Syndrome where he is no longer able to move his eyes to establish communication. I look for the subtle movements in his eyes to verify his intentions, but there is a limit to how well I can understand him now. Also, Hajime seems to be having more difficulties watching TV. I recently started playing some of Hajime's favorite songs.

Hajime is not ready to go on an outing for the possibility that he might catch some bugs. This has to be Hajime's most challenging time, both physically and emotionally. I would appreciate everyone's continued encouragements.

Thank you all very much for your prayers for Hajime.


(translated by JK)

Is This Too Hard?

It has been two weeks since Hajime was discharged from the hospital. None of the palliative care people came expect for a nurse came by the day after he was discharged for an initial evaluation.

But today, finally the “once-a-week” nurse came to check-up on Hajime. The reduced amount and still dark colored urine worried us, but his vital signs seem to be very good and stable.

However, this morning while I was changing the tracheostomy gauze, it was a pale green color. One of the bacteria which had been residing for a very long time always shows up whenever the infection comes back. I am thinking it's back again. While the antibiotic is working, Hajime's stool becomes loose, but when the antibiotic loses its effect, he experiences constipation and his secretions go back to being a green color. Thinking that it will be like this again this time for Hajime, my heart sinks.

Last night, while talking to Hajime, I asked him, “Is this too hard?” Then he replied “No.” But his face turned deep red and the tears came pouring out of his eyes. I could not watch his tears without tearing up myself. I cried hard but quietly by the head of his bed where Hajime cannot see me. It must be extremely difficult for Hajime, but he tries to hide his feelings.... Hajime was unable to express so many of his painful, fearful, and intensely painful experiences while he was at the hospital, including three dangerous situations. It must be an unbearable experience for anybody, but... Hajime tolerates somehow….

Hajime's little sister, Yuki, tries her best to encourage her brother, by putting her own cheek to his cheek, showing off her Mini-Mouse's head band, getting Mint up from sleep so he can see him. Hajime expressed his happiness by letting tears run down his cheeks.

My middle son, Ryo, is so worried that he is breaking his heart over his brother's condition. I try my best to listen to him, … but it is not enough for him. I am hoping that Ryo's pain in his heart will be directed more towards God.

(traslated by JK)

Satoko-san

While Hajime was in the hospital, we had not been able to post to the blog, but Satoko also kindly took the time to come to LA all the way from Japan to see Hajime.

Satoko is the one who has been translating the Japanese blog to English, and since that time, we have become great friends.

Hajime would be in tears whenever Satoko came to visit him. The bracelet that Hajime has been wearing was a gift from Satoko, and we were thinking that their feelings have been connected through this special bracelet.

Although I had met her for the first time, it didn't feel like this was our first time meeting each other. Her visit really cheered me up. 

Satoko also took the time to show Hajime photographs from her visit to Israel. It was quite a memorable experience for me to observe Hajime taking quite an interest in looking through the photos. Around this time, Hajime was developing edema in his eyes, and he was not able to pay much attention to other things, but he paid close attention to the photographs that Satoko was showing him.

Satoko, I apologize for not be able to be so hospitable, but I was really happy that you came to see us. Thank you!

(Translated by JK)

Akemi-chan

Hajime has lots of great friends. Among these wonderful friends is Akemi, who has become his long time friend. She thinks of Hajime like a real younger brother. 

When she found out that Hajime was hospitalized and that Hajime 's condition had worsened, Akemi was very worried. Not being able to contain herself, she flew all the way from Japan to the United States. Here is a picture of Akemki's utmost heartfelt effort to be at Hajime's bedside.

Her stay had lasted for only 36 hours, but it was one that was filled with wonderful memories of us spending the time together. Thank you, Akemi. Looking forward to seeing you again!

(Translated by JK)

Unable to urinate

Hajime celebrated the second day after leaving the hospital. At times, we were convinced that we would not be able to return home together with Hajime, but this has been a true miracle. Hajime's hard work is truly amazing, and he makes us all proud.

Arriving back at home, he became unable to urinate on his own, and his urine was mixed with blood clots. He now has a folly catheter, but the urine output is quite little. We are quite alarmed by his much concentrated urine with a red tinged color. If he is experiencing dehydration, his heart rate would be much higher, but his heart rate is within a reasonable range. His blood pressure is little high, but this is not as much of a concern.

Regarding Hajime's eyes, his eyes are motionless, and we are unable to establish communication with him. However, we try our best not to miss any of his subtle eye movements to have some level of communications and to understand Hajime's various intentions while it is still possible.

After his discharge from the hospital, we were not able to give Hajime a good angle for his television viewing, but today Hajime had a very good posture, and we were able to have Hajime watch the movie Evangelion. Hajime was giving his best effort to keep his gaze down to watch the movie. After the movie, Hajime got to listen to a CD given by his Grandpa and Grandma Tajimi over and over again. Today was a great day for him with a little more activity. On that CD, there were many of Hajime's favorite songs, and this made my heart softened too.

Tomorrow, a new caregiver for the first time after leaving the hospital will be here. There is more care necessary than the previous level of care Hajime was receiving. We really hope that Hajime will be receiving a good level of care. His arm fracture included, we would like to see him cared for in a very gentle manner.

(translated by JK)

Discharge

Hajime is going home tomorrow! Yeah!

Thank you so much for all of your support.




(translated by HM)

Ups and Downs

Hajime’s conditions during these past few days,,,

His diarrhea still has not been recovered.
Poor Hajime, is suffering a lot.

Also, he is suffering with his eyes, and the white part of his right eye has become swollen, to the point where it outgrown his eye.
Yesterday, we had and eye examination by an ophthalmologist, but all he said was that since his left eye has recovered, his right eye will probably recover as well,,, I was like, “That’s all?”  I feel so sorry for Hajime.
Yet today, he is getting his brain CT scan, so as for now, we are waiting for the diagnosis.

Although his fever lowered and it has not been going up since, there has been an extreme fluctuation in his blood pressure and his heart rate.
This is a symptom well seen in ALS patients, so I want to take a careful notice at it.

His white blood cell counts are becoming normal, and his pneumonia is almost fully treated.  I am impressed by how hard he worked to hang on.
Let’s hope on Hajime’s recovery from here on!
 

(translated by RA)

His fever went down

Hajime’s fever went down!

This is all thanks to everyone’s prayers.
Ever since last night, his vital became stable, and he was finally be able to sleep. It looks like he was able to turn the corner.

We deeply appreciate everyone’s comments.
Since I cannot send message to each person, please let me thank you all, at this moment.

Thank you always for your encouragements.
Thank you always for your prayers.

Thank you.  Thank you, so very much.
 

(translated by RA)

Fever since yesterday

Hajime has been having a fever since yesterday.
Today his fever went up to 39.5 degrees, and he looks painful.
But we could not able to communicate with him, since his eyes would not move.

His very poor condition has been continuing for days.
His breathing is becoming less, and we are very worried.
 

(translated by RA)

Difficult Condition

By Hajime’s condition, it would take a while for him to be discharged from the hospital.

Today, his heart rate rose again to 150. Also, his blood pressure was high. His Oxygen saturation level and volume were low. In the end, he had a fever and he was going through a lot. His heart rate was 145 by the time when we had to leave.

In the afternoon, different doctors came to take EMG, X-ray, and CT scan. It was such a rough day.

Hajime’s eyes won’t move anymore. He barely reacts to our words. Also, the white parts of his eyes were swollen. He looks like a completely different person compare to the time when he first came to the hospital.

At this point, I am really depressed.
“What if he would not be able to go back home,,,” it frightens me when I think about it that way.
 

(translated by RA)

Unfortunately

Unfortunately, removing pneumonia during the bronchoscopy surgery failed yesterday. It turns out to be that there is an inflammation under the lung, and that the body’s self -defense substance was covering the tissue. Since that part was under the lung, and this time’s pneumonia was lower than that, the bronchoscope could not reach pneumonia because of that tissue.

For the next step, there is no other way than to give him antibiotics.
The plan is to give him antibiotics for about 4 to 6 weeks, but then that way, he has to take the CT scan and x-ray every other week.

Since we have to give him antibiotics, we have to change the midline to a PICC line. Midline could only last for a month, whereas PICC line holds for a year. He might go through that procedure.

When that is over, there is a possibility that he could be discharged from the hospital. Yet, that makes him being discharged from the hospital with pneumonia, which makes me really worry. It makes me deeply anxious when I think about the antibiotics not working.

In the end, we have to leave up all to Hajime’s vitality.
Good luck Hajime!
 

(translated by RA)

Hajime’s update

Hajime seems to develop pneumonia. Doctors were planned to do bronchoscopy procedure yesterday (Sep 1) to suction a sample and clean out his lung. However, they found some abnormality on his pupils so procedure has been postponed and instead do the brain CT scan. His pupils were open wider than nominal and also show a slow response to a light. Fortunately, this brain CT scan result came back as normal.

I have learned that this kind of pupils problem sometime seen on ALS patients.

The bronchoscopy procedure is scheduled tomorrow (Sep 3). He will be sedated so it should be less stress on him. I just wish everything went smoothly.

Doctor told us that if they could identify better and to give more accurate antibiotics then we could communicate with Palliative care doctors to give them at home. I'm hoping that the discharge date is getting close.

(Translated by HM)

Critical condition

Today Hajime is less alert and even we talked to him, he fall back into sleep.
His blood pressure is all day low something like 70/40. Doctor start to give IV fluid for this and by the end of the day, it comes back to nominal values.

During this relatively short hospital stay, Hajime became very critical condition already for two times. 

For the first time, it happened during the daytime.
While hospital staffs were turning Hajime to help him clean, my husband notice that his breathing tidal volume was decreasing. My husband told to the staff to put back Hajime in regular position but they ignored him and kept working. Soon after, Hajime’s oxygen level starts to drop rapidly and become around 40%. Normally, it should be around 100% so 40% is very dangerous condition. Because monitoring system start to alert every body, there were many nurses and respiratory therapist (RT) comes into our room. After for a while of struggle, switching from the ventilator to the Ambu bag made to recover his breathing.

For the second time, it happed during the nighttime.
Right after we got back to our home around midnight, we got a call from Hajime’s night shift nurse. Hajime’s heart rate goes up to 160. This is not usual for him and I sensed bad so I asked my husband to head back to the hospital. I have to stay at home cause we could not able to leave our kids alone.
When my husband got back in Hajime’s room, his heart rate was even higher around 209. There were a number of doctors and nurses were working on to make his heart rate goes down. Four staffs were standing on his each limb trying to have IV line to give him a medication. Because with his swelled limb on top of very thin veins he have, they could not get a good IV line even with several pokes.

I can only imagine how hard time Hajime gone through. It must hurt him a lot because of poking. His heart must hurt too.
I’ve ask one of our friend to keep our daughter and myself and Hajime’s brother Ryo head to the hospital around 1am in the morning.
When I get to the hospital, the medication seems to kick in and all the vital were within nominal.
This time, I was truly feared that he might not able to make it but I am so proud of his fighting spirit and his strength. 

Because of those incidents lately experiencing, I am so scared. 
I know God saved Hajime.
I know so many giving us positive thoughts and prayers.
I’m still have so many worry in my mind but I will be positive and keep praying so that we can go home all together. 


(translated by HM)

Hajime is in hospital

Hajime is been hospital since last Friday (Aug 23). Friday was our regular Botox appointment so we rent a van in morning. Botox injection just went find and we head to ER for the G-tube replacement. We kept waiting for few hours till procedure starts. It was around 4pm. Doctor told us that the procedure goanna be just a few minute so we just step out the room and wait in front of the door. The procedure turned out a bit longer that we thought and then doctor came out to explain what happen. Doctor told us that the bumper at the end of G-tube to make it stop coming out snapped out and fall into his stomach.
They decide to use endoscopy to grab it out the bumper. First they try to use the adult endoscopy but it did not go through Hajime’s throat so they tried pediatric one but that even didn’t worked. It turned out that Hajime’s throat have closed since he have not used for a long time. Because they struggled using the endoscopy, a half hour procedure turned into more than one and a half hour with explanation of “we give up”. So the next plan was to hospitalize Hajime and use medicine for loosening the bowels.

We kept waiting for a long time at the ER room till finally transfers to the hospital bed. It was around 3am. Medications start soon after.

No bowels movement on Saturday. Based on X-ray, bumper did not moved at all. Since Saturday night his bowels movement start but so far we don't see anything.
On Monday, finally the bumper moved into small intestine based on the X-ray. It’s getting close.
I’m very worry that having so often of diarrhea must give so much stress on Hajime. Hajime is been in a good sprite as always.
I’m hoping that the thing comes out and we can go home soon.


(translated by HM)

Last visit of Mary

Today was last day of Mary’s visit.
She had been giving a great care to Hajime for two years and also supported us too. She was kind, thoughtful and dependable register nurse.
I am so sad.

Hajime is having a care through Kaiser Palliative care. Mary going to work for the hospice team so she has to leave our case.
We hope her best in her feature.

Thank you so much, Mary!

(translated by HM)

Message from Naoko Yamazaki (Astronaut)

It was a bit while ago but we had a nice thing. We got a message from Naoko Yamazaki who is an astronaut.

One of our friends Itsuko who help us contact to Kimiko Fujita who has connection to Naoko Yamazaki and requested for a message.
Few weeks later, Kimiko contact us and one of her friend name Oda-san now has a message from Naoko Yamazaki. 
Few days later, Oda-san visits our house with her message to use.



Thank you so much.
Hajime was also very happy.


(translated by HM)

Kari Wahlgren (Voice actress) visit

On last Wednesday, Kari Wahlgren visits our house!

She was very kind and friendly all the time and kept talking to Hajime.

Kari played a queen voice on the movie “Tangle”. She is also Tigress voice on TV version of “Kung Fu Panda”. 
She is also on some TV show as an actress. She is a real celebrity and very big deal whoever know about Amines.



With Hajime and his friends.

With Hajime and our family.



Hajime was so excited. He even got a kiss to his forehead,,, 
Thank you so much, Kari!


(translated by HM)

Tremendous love

Today is very important day for my husband.
Today is his birthday and also one-year anniversary of his spacecraft launch.
Today is also a day that two doctors, nurse and social worker come to our house to discuss about the pass forward plan for Hajime’s care. In other words, they wanted to discuss about any wishes of care including withdrawing the life support system, if Hajime’s eyes doesn’t move and not able to communicate anymore. It is such a heart breaking topics we need to discuss.

The day before this, we had a family counseling. This time, all of us wrote a letter to Hajime and read it to him out loud.

Here is my letter.
------------------------------------

Dear Hajime,

No matter what happen even you could not see us anymore, our love will not goanna change at all. I’m so sorry that you have to be in the bed all the time lonely. All of us are thinking about you all the time.
Thank you for always caring our family.
I can see your smile.
Without any words, I can feel your thoughts.
You always make us happy and giving us strength.
You are so miracle child.

Some day, your eyes might close and won’t open. Some day, your eyes might not move and not able to communicate with us. But no matter what happen, I am always with you.
You might need to walk in the dark alone. But please listen to your heart.
We are always together.

Your Mom

------------------------------------

It was very hard for me to read this letter without crying.
After all of us read their letters, Hajime told us that he want to say something back. He put together a letter to make a sentence which was,,,,

Happy Birthday Dad

It was so touching. How thoughtful, he is.
He is facing most difficult moment but yet he wants to cheer us and want to celebrate his father more than anybody.
All of us could not help to hold their tears. Thank you Hajime.

I can't express how much you have been helping us, yet we suppose to help you.
God bless.


(Translated by HM)

Treating My Children Fairly

Recently, Hajime has been having a hard time emotionally.
There is nothing on TV that he wants to see, and there is nothing else he can do.
He seems to dislike being read to or listening to music.
So during the day, he just lies in bed staring at the ceiling.

Caring for someone is not just taking care of his physical needs, but also handling his activities and emotional issues.  But I have the feeling that I am not doing those things.  I am so disappointed in myself...

Recently, he has been having a lot of trouble moving his eyes, and now he is unable to move them.
It seems that when he consciously tries to move his eyes to the right or to the left,  he strains his eyes and they don't move well.
So it is very difficult to communicate with Hajime.
Even if we use the message board, he needs to take a lot of breaks before he can get the message done, so it takes almost an hour.

Because we do have other children, things often get a bit difficult.  I end up putting Hajime's needs first. Then I make my youngest child feel neglected.  But I am trying to pay more attention to my other children.  Especially when my husband is at home.

I do want to treat all my children fairly...


(Translated by MS)

Haircut

Kumiko, who had been giving Hajime haircuts before, was finally able to return to America from Japan. Yesterday, for the first time in a long time, she cut his hair.

I think Hajime felt good too.

Recently, Hajime's scalp has been quite dry, so Jamie suggested that we change his shampoo.  Jamie has been giving Hajime his bed baths.

I plan to buy some new shampoo.

It's nice that Japan has a lot of good shampoos, but here, one bottle costs ten dollars, so I'm hesitant to buy it.


(Translated by MS)

Stephen Hawking Lecture

Last Tuesday, Stephen Hawking gave a lecture at the university where my husband works.  This was a valuable opportunity for Hajime, so he went with my husband.  Only one guest was allowed per person with a university ID, so unfortunately I had to wait in the car in the parking lot.

Even with ALS, Stephen is continuing his research.



It was amazing how he was able to input one letter per minute on his PC.  It was also great that he could speak about the origins of the universe in front of so many people...
It made me think how great it would be if Hajime had his energy...

The lecture was an hour and a half long, so I was relieved that Hajime managed to hear the whole thing.  Something was wrong with his suction machine at the beginning and he couldn't suction, but somehow he made it through to the end.

I think it was a very valuable experience for him.
But part of Hajime didn't even want to go.


(Translated by MS)

Miso Soup

On Wednesday, our pilot friend came to visit again.
This time, he said he wanted to give Hajime some miso soup, so he bought him Chef Rokusaburo Michiba's miso soup.

I quickly diluted it a little bit and then gave it to him through a syringe.

After I gave Hajime the miso soup, he sat next to Hajime and ate "with him".  He always does everything he can for Hajime. Toru, thank you so much.



(Translated by MS)

10,000 Hits

How wonderful!  Hajime's video received its 10,000th hit.
Hajime's ALS Life



I'm glad that many people have seen it and made comments.  Thank you very much, everyone!


(Translated by MS)

Thank You for Coming from So Far Away

It has been hot lately.
The exterminators came and sprayed around to get rid of the termites, so I'm relieved.  I hope we don't get any more termites!

Today my friend Yoshie came a long way to visit Hajime.  She brought her children too.

They brought Ultraman and Kamen Rider DVDs and Doraemon books.  Hajime has more things to look forward to.

Thank you so much for coming from so far away.

Her children like the same games Hajime likes, so the next time they come,  I hope they will play games with Hajime's younger brother Ryo and Hajime can watch.


(Translated by MS)

Summer Will Be Hard

Today I updated my English blog.  I was behind.
It was a good opportunity to look back and think back on this and that.

The past few days, we have had flies in the house, and we're having a hard time getting rid of them.
And yesterday there was one on Hajime's face.  I can't always be watching his face and I feel so sorry for him (when this happens), so when I see a fly near Hajime, I am frantic to get it.  Hajime can't do anything so he can't even shoo a fly away.  I really feel sorry for him.

Hajime's room is really bad, because in the summer it is hot and there are bugs.  We don't know what to do because there is nowhere else to move him.  In the winter, it is OK.  I want our home to be the best place for Hajime to be.  I have to at least be watching for bugs.

A few weeks ago, we had a big problem with termites.  Luckily, there were none on his bed, so all we had to do was get rid of the termites on the floor.  It turns out that there are termites under the house, so that will be taken care of sometime this week.

Bugs are really terrible.  Hajime hates bugs, so I am obsessed (to keep them away).


(Translated by MS)

Disgust with Myself

I am disgusted with myself.

I am a very bad person.
I think I have used Hajime's illness to try and gain people's sympathy.  I think I have been using relationships with people to try to bury my grief.

I have lost many friends this way.
Friends that I had been close to started to criticize me.

I have brought this on myself.   But I feel bad for Hajime.
Even friends who had been supporting Hajime stopped visiting because they wanted to avoid me.

The difficulties of caring for someone, physical issues, emotional issues...
It is really hard to have people understand.
Even if people don't understand, I must correct myself...That's what I think.


(Translated by MS)

Water Is Collecting

Hajime's runny nose has been very heavy the past few days.

The doctor came last week and prescribed allergy medication, but it has not helped him at all.
I'm wondering if maybe it is not allergies.

His runny nose is sometimes clear and sometimes green.  Why is that?  I guess there are so many things that even doctors don't know.
I hope that his runny nose problem will be solved soon.

Last Saturday, they replaced his trache and the respirator circuit, but it looks like water is collecting inside the circuit (tube) when they replaced it.  That is why the title volume decreases and the alarm keeps going off.

It happened early yesterday morning and this morning.  No one knows why water tends to collect when they replace the tube.
It's attached to a heater.  If we leave it,  it should completely dry up.  The water drops are collecting in the tube because of the heater.  When there is a certain amount of water in the tube, the alarm goes off.

I wonder if people in Japan can change something like this on their own?

The fact that neither the day nurse nor the night nurse understands this problem is another issue.  They don't know why the alarm goes off.  I wish that they would put a little more focus into their work.


(Translated by MS)

His Teeth Are Wearing Down

About his teeth...last time, the problem was that his teeth were starting to spread apart, but now his teeth are wearing down.

In the doctor's opinion, his teeth may be wearing down because they aren't being used, in the same way that bones become thinner if they're not used.

And, his bite is much more misaligned than before.

We must always keep his bed upright, and since he can't support his head, his teeth gets out of alignment.

They decided to wait and see and keep an eye on these two issues.

Until they find a treatment for ALS, I will always be anxious about what other problems may arise.

We can't do anything about his teeth until he sees a dentist.  And I wonder if there is anything we can do to prevent his teeth from wearing down.
We must remember to keep brushing his teeth to keep his gums strong.
I think we are being very diligent about his oral care but...

Are there any ALS patients with the same symptoms?  


(Translated by MS)

He Is Stable

Hajime is very stable now.

But his nose is very runny...so runny that I almost can't keep up with the suctioning.  At times, it is greenish, but I think it is more often clear.
When I suction the trache,  it is green at the beginning, but later it becomes clear.  That's why I am not too concerned.

The caregiver has improved since the last time, and she is cheerfully communicating with Hajime again.
I can't be too harsh with her because I don't want her to quit on us.  I'm trying to deal with her with the future in mind.   

The sakura are in full bloom in Japan now.
I wish I could let Hajime see them.


(Translated by MS)

Lauren and Robert

Today, Lauren and Police Officer Robert came to visit.
They really try to encourage Hajime and come often.

Do you all know the movie "Act of Valour"?



Robert recommends this movie because he thinks it's the kind of movie Hajime would like.
He is going to bring the DVD over tomorrow.  We are so excited!

It's good that Hajime lives in this city.  The city officials have been very supportive of Hajime, and they sometimes visit him.

There are times when I get down because of what people say, but I can't tell you how much we have been helped by those who love us from the bottom of their hearts and support us unfailingly.  Thank you so very much.  


(Translated by MS)

Is It Going to Get Worse from Here On?

Thankfully, Hajime has been stable recently.

Our current caregiver has been getting worse lately.  
At the beginning, she tried very hard to communicate with Hajime, but now it seems like it's a hassle for her to record Hajime's words.  (As you may remember, she has to input each letter of the alphabet one by one as he gives them to her, so it takes a long time).  Now she just says,
"YouTube from 2:00!" and doesn't try to record the words Hajime is indicating to her.  At other times, she doesn't try to ask him what he wants to watch on TV.

We haven't actually seen this happen so we can't say anything to her.  But my husband and I have seen her yawning right in front of Hajime, so we reprimanded her about that.  Her yawning was too much.

And then this happened today.
Hajime cannot move his legs (on his own), so we have to move them at regular intervals.  We lay them down in one direction or another or lay them straight out.
When she had to bend his legs, she used to bend them in a natural position, but please take a look at this photo.

You can see that his legs are completely folded and bent.  This is not the way Hajime wanted his legs to be moved.  It was just her arbitrary decision to do this.

She also did not fold his pillow in half all the way...



I often read Genzo's blog.

Everyone who is involved in his care is amazing.
They not only take complete care of him, they are also completely in tune with his thinking.  
The difference between Hajime's caregiver and the Japanese caregivers is glaring.
I think that Japan is better in this area.
And they're very courteous and thorough.

Our caregiver is now in her third month.  It is going to be a problem if she continues to get worse instead of improve.


(Translated by MS)

The Pickline Is Removed

Mary came to see Hajime on Thursday.
We had never taken a picture of Mary until now, but today she let me take one.

I feel calm just by looking at Mary's face.
She is truly a vital part of Hajime's care.

This time, we talked about many things and then she removed his pickline and checked a lot of things.

The pickline had been difficult to insert, but taking it out was very fast.

Mary is holding the pickline.  I was amazed at how something this long could have been inside Hajime from his arm to an area near his lungs.

They thought it should be removed as soon as possible because the risk of infection increases the longer you leave it in.   And so they decided to take it out today.

Hajime is thinking about having a new pickline put in,  but they said that it wasn't good to just put in a pickline if he didn't have an infection.
That could actually increase the possibility of an infection.  So they decided that if he came down with an infection and needed an IV later,  they would make an appointment and put the pickline in at that time.

But, to tell you the truth, I am worried.


(Translated by MS)