Sep 29, 2012

Because It's Palliative care

Hajime's fever is finally coming down.
He still had a fever last night, but we gave him something to lower his fever, so this morning he is back to normal. But we must not let our guard down, because these past few days, he has been coming down with a fever at night.

Last time, I wrote about our appointment with the doctor and he told us the following.

He said that every time Hajime has some infection, they have been giving him strong antibiotics to treat it, but if he were in the hospital, that is something they absolutely would not be doing.  He said they continue to do that only because they are trying to ease the pain.

He explained that, as Hajime's palliative care team, they are treating him to relieve the pain.

We, as parents, worry a great deal about that.  We understand that, but we also feel anxious about it.
He has taken antibiotics three times since the beginning of this year.
Of course, we must be careful with the antibiotics because we don't want him to develop a resistance to them.

They are planning to do tests to figure out exactly what (bacteria) is causing this fever.

We have already started giving Hajime "breathing treatments" using an antibiotic called tobimiacin around his lung area.
The same can be said about this medication.  He will develop a resistance.

My husband and I are taking this very seriously.
Is giving him antibiotics the best?  We don't know anymore.
We can only pray.

We pray that he doesn't get a worse infection!

(translated by MS)

Sep 26, 2012

His Fever Won't Go Down

He has had a fever since Sunday night.
And he just finished his antibiotics on Friday.
I am very worried.

He had a Botox appointment today so we went to Kaiser about 11:00 am.
The parking lot at Kaiser was full.  We couldn't find any parking except valet parking.  I found out for the first time that, I could use valet parking even with a wheelchair van. (I should've known...)

Since last night, Hajime was shaking with fear.
I thought that the Botox treatment must be quite painful.
He was crying this morning.  I felt so sorry for him that I started to tear up too.
I think that today's procedure at Kaiser must have really been painful because it actually caused some bleeding. Hajime's eyes were red from crying.
But if we don't have this done every three months, he keeps producing we'll have to do this again in three months.

Next we had an appointment at 1:00 with the doctor.
We have a primary palliative doctor who is in charge of Hajime, but it's usually a resident who sees him.
It's too bad that the doctor keeps changing after just a short time.
We had a new resident today too.

This doctor seemed a bit stern...I hope it will be OK...

If Hajime's fever persists, they will take a sample of his secretions.
I pray that his fever will go down soon.

(translated by MS)

Sep 22, 2012

Endeavour on TV

Today, the Space Shuttle Endeavour flew over Los Angeles area where we live. The Endeavour mounted on the airplane landed to LAX around noon. It was broadcasted through the TV all the time.

Hajime was actually sleeping but I wanted to let him see this so I woke him up. Hajime was watching this space shuttle news very closely all the time.

I didn’t know that the shuttle going to fly over Pasadena area and even able to see directory. I regret that if I known I should take him outside to let him see directory.
Although, it was very hot day and difficult for Hajime to wait outside. I think Hajime was happy to watch through TV with me.
It typically takes about an hour to sit him down on the wheelchair from the bed. I wish we could let him sit on the wheelchair more easily.

Hajime’s sister Yuki took this photo. She went to Griffith Observatory and took this photo by herself. Wow.

(translated by HM)

Sep 19, 2012

Hajime Is So Cute

I had fun talking and laughing with Hajime yesterday.

When we talk,  he is usually relaxed and listens to me.  Yesterday I shared my worries with him.
We started talking about computers.   I asked him, "Don't you want to use the computer?" and he answered, "Yes".
I immediately said, "Really?"  over and over, so he moved his eyes away from me and acted silly as if to say,"Huh? Who said that?"
I laugh when I think about that even now.  It was a happy day.

I am blessed that I can talk to Hajime like this even now.

I've talked about this with my husband, but now it seems that Hajime really doesn't feel like doing anything.  During the day he doesn't even watch TV.  He just stares at the ceiling.
We talked about how great it would be if someone could sit and watch YouTube with him or watch something else on the computer with him.
Right now he doesn't have any friends or visitors coming to see him, so we are looking for someone who could come and do something like that.  I think my husband is thinking of talking to the church pastor about it.  I hope something works out.

If there is anyone reading this blog who can come to see Hajime, please come!

We are also looking for a car/van so that we can take him out more easily.  That's why I'm thinking of putting out a call for the Hajime Fund again.  We ask for your support!

(translated by MS)

Sep 16, 2012


Today, there was a surprising incidence.
I wrote a while ago that the day shift caregiver going to quite.  Until a new caregiver comes, she was still working for a short time. (Up to 3pm so she can pick up her child.) Finally, from this Monday a male caregiver start his shift and the previous caregiver moved her shift to weekend.

Today was her first time to work for the weekend. However she got angry and left her work. We notice that the way she take care Hajime was not we have intended so my husband try to explain to correct it.
When we do Hajime’s trache care, we use hydroperoxide diluted with water to sterilize but somehow she was never using hydorperoxide. This is very important to sterilize and prevent infection…

It may sound very minor detail from other but as a parents, it matter our son’s life so just wanted to correct it. However, she argued that this is how I have been taught. She said, “I’m going home” and actually left while we were arguing about this.
After that, caregiver agency called us, and agreed our claim because it was actually written in our care plan instructions. They decide to terminate her from Hajime’s care.

We were arguing in front of Hajime so he should have a hard time emotionally.
It was very sad incidence who are responsible for someone’s life arguing in front of their patient.

(translted by HM)

Sep 14, 2012

Today Is Two Years

Today is exactly two years since I started writing this blog to keep a record about this disease.
Two years seems long, but it passed quickly.  I feel like it was very short.

Yesterday I read my blog entry that I wrote about the time I first started.

I realize that,  back then,  I was just moving forward not believing that it could be ALS.  I recall that I felt scared every day.

I was very worried that Hajime would eventually not be able to speak.  His disease continued to get worse and worse, and now he has lost his voice.

I thought about letting him eat before the time came when he would no longer be able to eat anything, but the disease progressed so quickly that within a year, he could no longer eat.

We used to sit out on the veranda at the old apartment, and I would often ask Hajime about what he was thinking.  He said he was afraid of the disease.  That's how we lived every day.
I can still vividly remember those times.

At the end of May last year, we met with the social worker to discuss putting the trache in.  After that, his breathing became irregular and he started to choke.  He was taken to emergency. Over a year has passed since then. He had to stay in a hospital bed, and the disease continued to progress.  Finally, he couldn't get out of bed at all.  He had many procedures done and he lost his voice.

This disease is truly frightening.

I think it was good that I kept a blog these past couple years.  I think it has also been good to let people know about the real Hajime.

I want everyone to know that although his facial muscles have deteriorated and he can't smile anymore,  Hajime used to always have a smile for us.  I am also very grateful to the people who have told us that they were inspired when they saw Hajime's smile.
And I've met all kinds of people through this blog.

On his first year anniversary last year, he was in the hospital so I couldn't write anything, but with this second anniversary,  I am grateful because I know it has truly been with your support that we have made it this far.

Please continue to remember Hajime.
And pray that he can walk again.

(translated by MS)

Sep 12, 2012

Exhibition of Macross original illustrations

Hajime’s grandma, aunt and her son went to the exhibition of Macross original illustrations for Hajime.
We just received a package from Japan with a lot of Macross items they brought for Hajime.

The T-shirts was Hajime’s request but there were illustrations and much more. Hajime seem to read a book with tremendous interest. He was so happy.

Hajime’s brother asked Hajime to have one of that but Hajime replied as No by his eye. Watching their communication makes me smile.

I think whatever it is, having interest and motivate is very good and important.
Hang in there, Hajime!

(translated by HM)

Sep 11, 2012

Let's Meet Again

The ALS doctor from Japan with whom we've gotten close came to visit us with his wife, a professional opera singer. It was their last visit before returning to Japan.

When I think back, our friendship all started from him seeing my blog and sending me a message.  Since that time, he has come to our house three times.  SNS is amazing, isn't it?  I had never imagined that I would meet someone like him.  I truly think that it was a good thing to have started this blog.

There are differences between Japan and America with respect to ALS.  I have learned so much from him.
He has given us advice about treatments, listened to us share our fears, and taught us about many things, including devices to connect with the outside world.
He is also the same age as my husband, so we enjoyed being able to talk about all kinds of things.

And his wife is a wonderful opera singer!  She sang beautifully for Hajime.  I was deeply moved because I have never been to an opera before, and I never thought I would be able to hear it live.

They will be going back to Japan, but we will keep in touch.  I look forward to seeing them again.
The ALS research is progressing well, so I am excited about that.

Thank you very much for all that you did for my son and our family.
I wrote about this in my blog before, but Dr. Homma, who is an acquaintance of Dr. Hirai, made a device for Hajime.
My husband made it simpler and smaller so that he could use it right away.  I'm hoping that he'll be able to use it more and more.

Dr. Honma, Dr. Hirai, thank you so much!

(translated by MS)

Sep 7, 2012

Current antibiotic...

Because Hajime’s light fever did not going down for a while with runny nose, we decide to give antibiotics again.

Today Mary told us that current antibiotic is one of a strongest one. Since Hajime is using it quite often, there is a risk that his infection may become resistance to this antibiotic. This means even if he develops pneumonia, we don’t have a way to treat.
On the other hand, we just can’t wait and do nothing for current infection. It is very difficult problem.

It is most scary thing to develop pneumonia and not able to treat at all.
This was a little too much, my husband and I sank our head upon our hands.

(translated by HM)

Sep 6, 2012

An Urgent Phone Call But No Response

Hajime's nose has been very runny again since yesterday and it is green.
He has had a low grade fever all day today.  I am worried.
And there is a lot of secretion from his trache.

I'm guessing that he probably has another infection...
A fever and runny nose...That means it's probably a cold.
Tomorrow is Mary's day to come so I'm planning to talk to her about it.

The other day, I posted an entry called "The Respirator Malfunction".  When the respirator malfunctioned and Hajime was having trouble, we put in a call to the 24- hour palliative care hotline.  But no one picked up.  It went to voicemail, so I had to leave message.  I waited for a call back, but no one called, not even the next day.

Palliative care is in the same group as hospice care, so I don't understand how they can't respond to an urgent call.
What happens if the patient is in danger of dying during that time?
There was no call for two whole days.  It's supposed to be a 24-hour hotline...
Then we called Kaiser's member service number.
I think that they will call in a few days, but I was very discouraged because they're supposed to be a team that treats life and death situations.

When we had a problem with the respirator, we called the emergency number of the company that is in charge of the respirators.  They came right away even though it was a day off, and they followed up.  The kind of responses we get at this company varies a lot from person to person but that day, it happened to be someone named Jeff.  He is very good.  He came to check on the respirator often.  We felt relieved because he came right away to bring a replacement respirator.

If we hadn't been able to get in touch with anyone, I wonder what the situation would have been now?  I get scared just thinking about it.

I hope the palliative care team will look into why this happened and take care of it.

(translated by MS)

Sep 4, 2012

The Respirator Malfunction

It has been a while since I last wrote.
I wonder what Hajime is thinking every day, and I feel like I almost can't breathe.

Lately, there is a lot of the canned nutrition left in his stomach, so we can only feed him two cans a day.
I think that's why he is losing weight quickly.  His bones in his lower back are sticking out so much that I can feel them.  I don't think this is good and I'm worried. So I'm giving him at least three cans of nutrition.

But Hajime has started to hate the feeding.  He must know what would happen if he stopped doing the feeding.
I think that he would want to fight hard to live...
Sometimes I have to respect his wishes.
It's a scary and difficult situation.
However, he still wants juice so I am giving it to him.

I feel a bit anxious every day. I look like I'm fine, but inside I am filled with anxiety.

Oh, and something was wrong with the respirator today.  The breath count went up to 34 in one minute.  (Normal is 14-16).
So Hajime was breathing hard. Fortunately, we have a backup respirator so we immediately replaced it.  He started breathing better, but it was scary.
We don't know what might happen. It was the RT's day off, but we had him come later and he replaced the backup respirator with a different one.

What was scary this time was that the alarm did not go off.  When the tidal volume decreases, the alarm is supposed to go off. But even when the breath count went past 30, it did not go off.  We need to talk about what to do if this happens again.

At least Hajime did not seem to have suffered.

(translated by MS)