Nov 30, 2012

Hajime's Voice

Last night I was talking to my husband about Hajime's voicemail.  I start to really miss his voice whenever I hear his voice on the answering machine.

You probably haven't heard it much.

But I shed a tear...

I want him to get better soon and hear his voice again.

(translated by MS)

Nov 28, 2012

He Doesn't Want to Take Any Medicine

Even now, his breathing is still not stable.
His heart rate is high, and when he starts to have trouble breathing, it goes up to 140 right away.  I think it has a lot to do with how he's feeling.

We have been told to give him morphine when this happens.  We did give it to him last night, but he has been fighting taking any medication for a few months now.
When he has a fever, he doesn't want to take Tylenol...We've been told that he should take Ativan when he gets depressed, but he doesn't want to...At times like these, I don't know what to do.  But we've been continuing his care according to his wishes, so I guess all we can do is follow them.
Last night when I had him take the morphine, I encouraged him by saying, "You should take it because when you calm down, you might be able to breathe better!"

Hajime is not undergoing the usual treatment.  He is receiving pain management to make him as comfortable as possible. That's why they're using morphine.

As soon as he finished the IV antibiotic, he started taking a different antibiotic through his G-tube.  It has been several days, but he sometimes still gets a runny nose. There is an odor around his trache too, so I am worried.

I don't know if it's because of Hajime's cold, but one by one, everyone in my family has been catching a cold.  It looks like my husband is really sick right now. Until recently, Yuki was sick but she is well now.  I hope everyone including Hajime gets better.

(translated by MS)

Nov 26, 2012

Thank You for Coming

Thanksgiving is finally over and school will start again tomorrow.  The break felt long but it was also short.
It may have seemed short because my husband was busy with work.

I think it was good for Hajime because even though he couldn't taste any of the food, his friends came over to visit.
Danny, who moved away to Oregon, and Kevyn came to see him on the last day of vacation.

I'm happy that his high school friends came to see him on their vacation.

And many of my friends came too.

It really is fun to get together with people and have a good time.
Manami brought more of Hajime's favorite Studio Ghibli movies.
He's already watched three today.  Thank you, Manami!

Hajime is not doing very well, so he was prescribed a different antibiotic at the end of last week.  He is taking it three times a day again.
His breathing is not very good lately so I hope it does not turn into a big problem.

On top of everything else, I'm not doing too well either...
I've been bothered by something someone told me and I feel restless.
I have dreams about a traumatic day Hajime had, and I feel scared all day.  It's hard to explain but I feel like I'm going to burst.

(translated by MS)

Nov 23, 2012


We celebrated the third Thanksgiving since Hajime became sick.
The time has passed quickly.

The year that he became sick, our whole family took a trip to Las Vegas.
I remember very well eating turkey at our hotel.
I wish we could have taken a trip like that again the following year.  That year, he had been released from the hospital after a five-month stay and could no longer get out of bed, let alone eat anything.

Last year and this year, the many families who are helping us brought all kinds of food.
This year too our table is covered with so much food.
Joan is the one who arranges everything.
I am always so touched by everyone's kindness.
Thank you all very much.

I forgot to upload this the other day.  Here is a picture of his haircut.

Manami introduced us to a haircutter who can come to our house.  Her name is Chinatsu.
I forgot to take a picture of her this time, but I will for sure next time!
She is a very nice person, and she gave him a stylish haircut.

Kumiko, who usually comes to cut his hair, has been stuck in Japan, so she won't be able to come for awhile.  So that's why we asked Chinatsu to come.

The weather is good today and Hajime has been watching "Castle in the Sky (Laputa)" since the morning.
Right now everything is peaceful and I feel happy.

(translated by MS)

Nov 20, 2012

A Frightening Hour

This is what happened last Friday.

When I was changing Hajime's diaper sometime past noon,  the alarm on the respirator went off and so I immediately started suctioning.
I pressed the cancel alarm button many times but it didn't turn off.  (When the tidal volume is really low, you can't turn off the alarm).
The tidal volume stayed at around 200ml.
I suctioned several times.  I tapped his lungs to help him get rid of the secretion in his lungs, but even then, the volume would only get up to about 360ml.  When I asked Hajime, "Are you having trouble breathing?" he was crying and said yes.

When I checked the oxygen saturation, it was about 93 degrees.
With him not getting enough oxygen and the tidal volume not increasing, I did everything I could in such an emergency.  And still his breathing did not go back to normal right away.

I rushed to call my husband.  I kept calling for over thirty minutes because he was out picking up our children right then and didn't hear his phone.
So I gave up and waited until about 1:20 when he came home from picking them up.

I couldn't do anything except watch Hajime cry and complain about how he couldn't breathe.  That was an extremely scary feeling.
And the number just kept going down.
Holding back my tears, I just kept thinking, "What will I do if Hajime died right now?" so when my husband came home,  I burst out crying and crying.  I was scared being alone...I was very scared...I thought, "I'm so happy he made it!"

Mint was worried about me, so he never left my side.  Dogs are gentle, aren't they?  They understand their owners' feelings. What a help he was to me.

It truly was a frightening experience.
Ever since that time, I have not stopped thinking about death.  I have been thinking about how I should handle such a situation in the future.  What should I do
about those things that I couldn't do by myself that day?
In my dreams, I even see images of the moments right before he dies and I see myself giving up.
But just when I'm praying over and over "I hope this is a dream!"  I wake up.

Something changed inside me since this experience on Friday.  In a bad way.
All of this was traumatic for me and I am very scared.
It is a feeling that only someone who has gone through this can understand.

(translated by MS)

Nov 17, 2012

Yesterday Was a Bit Tough

Our new nurse started yesterday.
She seems like a very kind and reserved person so I hope things work out this time.  It really is difficult to decide things on just one interview.

Hajime finished his antibiotics on Tuesday morning, but his secretion is starting to turn green again.  There is an odor, and he has also had a fever for two days, so I'm a bit worried.  I don't know if Mary hasn't told us anything because she doesn't want us to worry, but I'm wondering if maybe Hajime has developed a resistance.   Of course, we can't keep giving him antibiotics...
I am very, very worried.

I am also concerned because something different is happening with the respirator.  Normaly, we do suction when his breath volume decreases and then volume become nominal. However this time, the volume drops even lower than before after the suction.   After a while, it does return to normal.
Mary said that we should check to see if air is leaking from the cuff or if the tube is loose somewhere.  The cuff was leaking a little air, so I feel a bit relieved that maybe that was the problem.

Yesterday when we were giving him a bed bath and we turned him, I panicked because the volume dropped very low and it did not return to normal even after he took breath after breath.  But after several times, I was relieved when it did finally go back to normal.

So yesterday was a tough day.

My friend Manami lent us a movie Hajime is recently into called, "Nausicaa of the Valley of the Winds", so he has been watching it almost every day.
In fact, he is watching it right now, next to me.  He watched it last night too.  There must be something about it that he really connects to.

I hope today will be a peaceful day...

(translated by MS)

Nov 15, 2012

Support Team Meeting

Last night we had a meeting with Hajime's support team.
Marilynne, Joan and Lydia attended.
Everyone was busy, but they took time out of their busy schedules to come.

This group has already been together for two years.
It was formed when Hajime's disease had not yet progressed much.
We did not meet when he was in the hospital so there were times when we didn't get together for awhile.  But I am grateful that they're still thinking of doing something for Hajime.

We discussed his current condition, the trip to California Adventure, the staff, and any concerns we had.
We talked about making plans to take Hajime out at least once a month.
I have a friend who can borrow a van and I'm hoping he can stay here for a long time.  Then we can take Hajime out often.

We also talked about fundraisers.
We have expensive bills for electricity, medicine, and other medical supplies.
But it's hard for us to ask for help, so I am very grateful for this idea.  First, I plan to write down in a notebook how much we are spending and for what.

Thank you for coming, support team members!

(translated by MS)

Sometimes Gently, Sometimes Harshly

Someone recently shared his opinions with me.

Until a few weeks ago, I was going out a lot.
This person could not stand watching this and told me the following...
That I should stay with Hajime all the time and not go out.
That maybe I was using my depression as an excuse to get out of taking care of Hajime.
That is what this person thought.

As you all know, I have been taking care of Hajime from morning until night.  Only at night do I have my husband's help and of course the nurse is there.

Until May of last year (when Hajime was still able to walk on his own)  I often went see friends or teach my craft class.
But from June our family's lives completely changed.
During the five months that Hajime was in the hospital, I went to the hospital every day, driving one hour one way, and we took turns staying overnight.
But I never thought, "I'm sick of this" or "I hate this".   Rather, I was so worried about Hajime's condition every day that I cried many times.

He was discharged in October.  At the beginning, we had no nurse, so my husband and I went through training at the hospital.  We didn't want Hajime to feel lonely so we thought of all kinds of things and moved his bed near the living room.

I wrote about this before, but I have depression.
I had had it for several years before all this happened.  My depression got really bad after Hajime got sick.  My husband was worried about me, so he tried to let me get out of the house.
It was not possible for my husband and me to go out together, so he wanted me to go out with my friends.

But because of Hajime's illness, I started to drift away from my friends and I couldn't see them as often.  There are some friends from that group who still come over to visit.  But there are also friends who did not know how to relate to me after Hajime's illness and just drifted away.
So, I had almost no opportunity to go out.

Still, I have to confront my own illness while taking care of Hajime.  This situation will not change.  I must face my illness in the midst of all this...because if I'm not well, my whole family will become depressed.

There was a time when I was rescued from my depression.
It was thanks to my friends who invited me out.
My husband was very relieved to see me being more cheerful, and everyone in my family supported me.
It was important for me to go out to ease my depression.

But I realized that I was relying too much on these people.
I don't know if it was because they thought so too, but some people changed their attitudes toward me and started to become more distant.
I feel very unsettled about that.

No matter how hard it was taking care of Hajime, I have never ever thought about running away from it.  So when someone tells me that he thinks that I want to run away, it makes me very sad.

As I write this blog about my son's incurable disease,  I hear many different opinions.  I know that can't be helped, and of course there are many things about myself that I must correct.  I waver between feeling thankful and feeling sad about the opinions that some people have of me.

People's opinions are sometimes gentle and sometimes harsh.

(translated by MS)

Nov 12, 2012

Deterioration of His Eyelid Muscles

Hajime's infection is not good.

He is diligently taking his antibiotics, but I'm a bit worried about the green secretion around his trache and the odor.
And, once in a while, his runny nose is very heavy.  It is very thick, especially from the right nostril.  His left side is just runny.

When he showed symptoms of the infection before, it was a few days after he had finished his antibiotics.  This time, he is in the middle of his course of antibiotics, so I am very concerned,  but Mary said not to worry because he doesn't have a fever.
But, to tell you the truth, I'm starting to wonder if it might be too late to wait until after he comes down with a fever.  I know we must evaluate everything calmly.

I plan to watch him carefully.

Yesterday, I looked at a video of Hajime from when he was in the hospital last year.
He looked more energetic, his face was more expressive, and he was able to open and close his eyes normally on his own.

The past few days, it has become extremely difficult for him to move his eyes.
We changed the way he indicates yes and no.  We changed it so that he moves his eyes sideways; yes is to the right and no is to the left.
When we ask Hajime a question, it looks like he is trying his best to move his eyes, but I don't know if his eyes have gotten stiff because his eyes are just partly open and we can see only the whites.
I have no idea if he is answering yes or no.

The disease continues to affect his eyes...
I just keep sighing.

(translated by MS)

Nov 9, 2012

Has He Built Up a Resistance?

Maybe he has already built up a resistance to the infection.

He is on a two-week course of antibiotics, but even during this time, his runny nose is green (and very thick) and there is green secretion on the gauze around his trache.
The secretion from his lungs is clear or cream-colored, so I'm not worried about that, but I am extremely anxious about the other two symptoms.

It will be a very big problem if the antibiotics are no longer effective.
Hajime's infection is very difficult to get rid of and we're afraid that it might also cause pneumonia, so we must watch him very carefully.

Mary is coming today, so I will discuss these things with her.

Last night, we interviewed someone for the day nurse position.
The three of us (Hajime, my husband, and I) had never all agreed on any of the people we interviewed before, but last night we did.
She's female, she has eight years of experience, and she has a gentle demeanor.
We contacted the agency today, so we plan to have her start from about the end of next week.
I hope this nurse will be good for Hajime and stay for a long time.

It is an extremely difficult task to make a decision based on one short interview.

(translation MS)

Nov 7, 2012

Something I Noticed

It's already been three days since that fun day at California Adventure.
I'm so happy that Hajime was able to have a really good time.

When we went, I noticed that not one person looked at Hajime in a funny way.  Isn't that wonderful?
It was very crowded but, of course, no one acted like, "Hey, this guy is in the way".  I was surprised at how different it is from Japan.

I think there are many people in Japan who look at disabled people differently.
I have seen that time after time.
But I was surprised at how, here in America, there are all kinds of facilities so that disabled people can go out and enjoy things like everyone else.  Also, rides can accommodate something as big as Hajime's wheelchair.
I wish that Japan would provide more facilities for disabled people.

Next time, we'd like to go to Disneyland.

Even if we can't go on the rides, it would be enough just to see the parade and the fireworks and the pretty decorations.
I'd like to go again during Christmas.

Hajime is still taking antibiotics for his infection.  But his secretion is green again so I'm a bit worried.  Why is this happening even when he's taking the antibiotics?

(translation MS)

Nov 5, 2012

Disney California Adventure Park

We went to Disney California Adventure.

We had to get all kinds of things ready including his oxygen, but with our friend Manami's help we were able to have a wonderful mini trip.

Our group included Manami, Manami's friends, Harumi, Eri, her son Ricky, and our family of five.
Thanks to all of you for your help.  I feel so blessed that we were able to spend such a wonderful time together.  Thank you!

I took about 150 pictures.  I posted a few of them here.

Dear God, thank you for a wonderful time!

(translated by MS)

Nov 3, 2012

The Day Before Disney California Adventure

We are finally going to Disney California Adventure tomorrow.
It has been almost two years since we went to Disneyland for his birthday in January last year.
This time, the main thing is to see the fireworks, not the fireworks at Disneyland but the light and water show called World of Color (at California Adventure).

This is a picture of the time we went to World of Color for Hajime's birthday last year.

We're going because Hajime wants to go, so I hope he can enjoy it.

The antibiotics are working well, so I'm hoping we can go without having to put tissue in his nose.  We do have to continue his suctioning.

We can only go for a short time because of his oxygen issue, so I hope we can really have fun.
We will borrow a van at 4:00 and then head toward Anaheim about 4:30.  When we get there, we will park in a lot on the first floor for wheelchair guests and take a private shuttle to the Disney park gate.

We have already bought the tickets, so I think we should be able to get in without any trouble.
It was Manami who made this little Disney trip possible.  It is because of her that we will be able to see a part of Disneyland that we've never seen. We will meet Manami at the gate tomorrow and then go immediately to the Aladdin show.

I plan to take a lot of pictures, so please take a look at them when I upload them onto my blog.

I'm already looking forward to tomorrow.

(translated by MS)