Sep 28, 2013

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)

Sep 26, 2013


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)

Sep 24, 2013


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)

Sep 21, 2013

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)

Sep 18, 2013


Hajime is going home tomorrow! Yeah!
Thank you so much for all of your support.

(translated by HM)

Sep 14, 2013

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)

Sep 10, 2013

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)

Sep 9, 2013

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)

Sep 7, 2013

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)

Sep 4, 2013


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)

Sep 3, 2013

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)