Apr 28, 2012

Putting in an IV

Mary came to visit yesterday.

Hajime still has an infection.  It is still green and it still has an odor.
It has been a week since he started antibiotics, but if things don't improve, it looks like he will have to switch to an IV (because the medication he needs can only be administered through an IV).
If we do an IV, he will have to go the hospital to place the pick-line. The normal size catheter lasts only two or three days, and even with a little longer catheter, it only lasts about a week. That is why they will have to insert a longer catheter that goes in his vein from his arm to his shoulder.
Just thinking about it makes me imagine how painful it must be, and I feel so sorry for him...but then this pick-line will be able to last longer than a month, so I think that's what they will do.

Whatever the case, I can only pray that this infection will clear up soon.

Also, his bedsores are a little pink and dry where the old skin is being replaced by the new skin, so we were told to put some cream on them.  But it looks like they are bleeding today, so it might be better to put a bandaid on them.

We had an assessment done on whether we can continue working with the palliative team.  As usual, we answered Mary's questions, and it was decided that we could continue.  When I think about it, I worry about what we would do if we didn't have this team (helping us).  They are working so hard for Hajime's sake that I can only pray that they can continue to do what they have been doing.

From last night, the tidal volume has been in the 300's, where it still is now.  This is not very good so we need to keep an eye on it.

(Translated by MS)

Apr 26, 2012

Feeling of sibling

Recently our kids feeling are more often down. Since we need to pay attention more to Hajime, Ryo and Yuki got less.

Ryo’s feeling become more sensitive. He thinks like “I should not be like this,,,” and feel guilty. He totally no needs to feel that way though.
I’m trying to listen his feeling as much as possible and it is really important to spend time with him.

Yuki is lately having an accident more often. Since we are paying attention so much to Hajime, Yuki is having a regression.
We probably need to have more skin ship and hug her.

Children’s minds are very sensitive. We need to catch their SOS right away.

(translated by HM)

Apr 23, 2012

His Hallucinations Stopped

The doctor examined Hajime on Thursday.

When I told him about Hajime's hallucinations, he said we should stop the medication immediately, and Hajime hasn't taken it since that day.
It seems those hallucinations have stopped and Hajime is less in a daze. Side effects to medications are scary, aren't they?

About Hajime's infections... he has a new medication for this latest infection, but if that doesn't work, he needs to take antibiotics through an IV.
In that case, he has to go to the hospital and receive an injection. I pray that this medication will work.

Since then, Hajime has been talking to me more (he responds yes or no to my questions) and he seems to have more energy.  I think he is happy to be able to talk to me about all kinds of things. It must not be too fun just watching TV all the time.

I have to work harder at talking with him more!

(translated by MS)

Apr 20, 2012


Since Tuesday, Hajime had been complaining about how his head doesn't feel right.
We had a problem yesterday.

Hajime told me, "My head feels funny. Can you do something?" There was nothing I could do but say, "That's probably because of the medicine, so let's wait and see until the doctor comes again."  But Hajime was crying and complaining bitterly.

Before long I noticed that Hajime's eyes were darting back and forth all over the ceiling, so I asked, "Do  you see something?"
Hajime:   Yes.
Me:         Is that a person?
Hajime:   Yes.
Me:         Male?  Female?
Hajime    Female.
Me:          Does she look scary?
Hajime:   No (she looks calm.)
Me:          Is her hair long? short?
Hajime:   Short.
Me:          About how old is she?  Young? Middle-aged?
Hajime:   Middle-aged.
Hajime was able to see her clearly, but of course, we could not see anything at all.

It seems the medication that Hajime has been taking makes him hallucinate. My husband said we should stop this medication right away, so starting today, I will not give it to Hajime anymore.

In any event , the doctor is coming today, so I will talk to him...

(translated by MS)

Apr 19, 2012

Slowly Coming Along

The device that my husband is making is a call system with which Hajime can call us with just the slightest movement of his toes.
This system as shown below is like the kind he used before where Hajime would tap with his toes, but my husband changed this device to a touch-sensor system.

Can you understand from this picture?
He made the touch-sensor part out of a cardboard box.  It's good to be able to use everyday things you might have around the house.

Hajime had been unable to use the tobii at all recently, but now he can manipulate the Xbox controller with just the smallest movement of his feet.

I am so proud of the way my husband is working so hard at this for Hajime.

(translated by MS)

Infection Again

We had someone from the wheelchair company to make adjustments to Hajime’s wheel chair yesterday.

He lowered the foot rest as Hajime cannot bend his knees.

He also straightened the neck support and head rest which were a bit off the center.

It takes a long time to put Hajime in his wheel chair, so we decided to have the adjustments without Hajime in it. Hopefully, he will be more comfortable in his wheel chair.

We had a bed bath today and Hajime told us that there was something strange going on in his head. His head felt hazy, but felt nervous at the same time. His doctor was not found right away, but he is scheduled to come on Thursday. I am wondering if it is caused by the new medication or his infection. Hope it is nothing serious.In the evening, Jim came over instead of Mary to check on Hajime.They found an infection from the secretion sample that we submitted the last time. When we changed the trach, there was something on it.It is bacteria they said. It has strong odor and the color does not look good. We don’t know why it was negative the last time. Hajime will be given antibiotics for the next 14days.I am so glad they found the infection.

Hajime’s bed sore started to worsen again. It is at stage 2. It is small about 5mm wide, we will apply an ointment with zinc to see if it will get better.

Translated by Yoko B.

Apr 17, 2012

Keep making excuses

These past few days Hajime has been sleeping during the day.
I wonder if he has given up because he has lost any means of contact with the outside world.
Every day my husband has been working on a device to help Hajime communicate his thoughts to us, but it has been difficult to complete. It will take just a little while longer, but Hajime has been unable to tell us anything.

He is taking a new medication to help him stay awake longer during the day, but I don't think it is working and he has been sleeping a lot.

He doesn't need the TV or any music...
He must feel so lonely.

Once, his doctor suggested that we plan some set activities for him on certain days of the week, but we still haven't done anything.
We really are terrible parents.
I know it's an excuse, but I can't move my body as I want to because I am so tired from taking care of him every day.

But if I just keep making excuses like that, Hajime is the one who suffers. I must do better.

I want so desperately for Hajime to spend his days living life to the fullest possible without any regrets, but what we are doing is, in fact, contrary to that. I was once told that I should think a little more about doing things for Hajime.
If you are looking at us from the outside, it can look like we aren't doing enough. We know how quickly his condition is progressing, but we aren't getting up and doing anything.
I feel so guilty.
Both my husband and I have so many things that we would like to do for Hajime, but it has been hard to actually do them. If we don't hurry, he may not be able to see anymore.
Before that happens, I want to arrange for Hajime to have some contact with people outside our family...
I feel like these are just thoughts in my head, and my body can't act on them.
So every day my husband is working hard at finishing Hajime's communication device, but it is tough because he has his work too.
.......But that is another excuse, isn't it? I.....

I tell myself I have to be more positive!
well, there are someday that think negativily.
But there is no change in the love I have for Hajime.
I will do as much as I can for him, from my heart.

That is what I'm thinking as a mother.

Translated by MS

Apr 14, 2012

Where Mint Likes to Relax

Recently, when we have been busy with housework or something, I don't know if it's because Mint feels lonely, but he has been on Hajime's bed.

Just today, Mint was quietly resting and waiting on Hajime's bed while I was doing the laundry.
When I asked Hajime, "Has Mint done anything bad?" he  answered, "No."  When I asked, "Are you OK?" he said, "Yes."  I think Mint knows that he needs to be gentle with Hajime.

Maybe it won't be long before Mint will come to tell us when Hajime needs us...(or am I getting ahead of myself?)

Lately Hajime has been staying up late.  He's still asleep today too.  (9:30 am)
But as I look at  him sleeping so comfortably, I can't help but smile.

I wonder what kind of dream he's having...

As I was writing this......
I just gave Hajime his medication and even during that time, Mint was waiting by Hajime's feet like a good boy.

But, after that, Hajime was crying.
When I asked why, I think he said it was because he wanted to hold Mint with his own arms.
He wants to show his affection for Mint...I think he really feels that.
I said,"Well, one day you will be able to take care of him."
There was nothing else I could say.
That is the sad reality.

Hajime really loves Mint.

(translated by MS)

Apr 11, 2012

First email in a while

Today was a day nurse Mary comes. We discussed about a medication we recently started to give Hajime to help him awake during the daytime. Somehow, when I give this medication, Hajime fall into sleep at the morning more. We decided to increase a dose from tomorrow. If it did not help within 4 days, we will increase more and so on. Hajime actually does not like this medication so I will keep eye on him to see how it is working.

His bedsore is now completely healed. His leg and elbow are both got well.

His skin is very dry so I need to keep giving him Vaseline. Because of the dry climate of this area, we have to take care his skin, eyes and noses.

Recently his bowels movement is getting more regular. However maybe because of too much medication it is too soft. We will reduce Miralax.

My husband is now upgrading the Hajime’s nurse call with touch sensor type. He cannot press the switch anymore.
Last night, he made a prototype and let Hajime use it. First thing he used with this touch sensor was to read his email. He was reading the email from the Church youth group. His heart is still with the youth group.

It is very important to prepare him something that he can communicate with outer world. I just can’t imagine how much he will gain from this. We need to setup his computer so that he can use again ASAP.

Keep up, daddy.

(translated by HM)

Apr 9, 2012

Hajime's Feelings

For the first time in a long time, I talked to Hajime about all kinds of things. Hajime's eyes were red from crying.

Are you sad? I asked. Yes, he said, blinking once.

What are you most sad about?
Are you sad that you can't communicate?
How do you feel about your illness? Are you scared?
Is it hard not being able to move any part of your body?
Have you ever wished you could die?

Hajime blinked as he cried in response to my questions.
He wants to say so many things, but if people don't listen to him carefully, he can't be understood.

We talked about TLS, totally locked in state.

We needed to have this talk.
His eyelid muscles are deteriorating, and one day he may no longer be able to open his eyes.
What will you do if that happens?
Hajime said, "I don't know".
But it looked like he was really scared. I'm not the one with ALS, and even I am frightened.
When I asked him what he wanted to do while he could still open his eyes ......
Do you want to try to play some games with eye-gaze?
Do you want to do Facebook?

Hajime was blinking.
I am thinking of different things to try for eye-gaze.
We could do Facebook right away, so we did it for the first time in a while.
Of course I manipulated the controller...

Hajime was reading the words on the screen very intently.
We even updated his status.
He would be so happy if he got some responses
. It looked like he wanted to chat like he did before.

I also talked to him about going out somewhere together.
"I want to see an air show at Edwards Air Force Base one more time."
The expression on Hajime's face when he communicated that thought to me was somehow so cheerful. I guess the best thing is what he likes.
He also said he wanted to go to Disneyland.
We do not have a car so we won't be able to do that, but if we could go, I would love to take him.
Until now, Hajime has not wanted to use a wheelchair and he has had no desire to go there.
But he did say, "I want to go", so I would like to figure out a way to take him.

I just checked right now, but it looks like there is no air show scheduled this year.

I hope to raise Hajime's spirits so that he will want to go out more.

(translated by MS)

Apr 6, 2012

I Wonder If He Understood My English

My children's spring vacation will be over in a few days.
Until yesterday, my husband and my other two children were away, so it was just Hajime, Mint, and me. We didn't have any problems, so that was good.

Today, the doctor came to examine Hajime.
We talked about all kinds of things and when I told him that I didn't think the new medication that he had started him on was helping much, he said that it would take a week to take effect so we should wait a bit and see.
He also said that the medication dosage for his secretions was too much, so he cut back on the medication called Rubinol.
Right now, Hajime already got a Votox and a radiation treatment, so we will watch him for awhile.
His secretions are a little green, but they have been green for about a month now, so the doctor said he would discuss this with the primary doctor.

Recently, there was blood in Hajime's stool (on the surface), so when the nurse came to visit last week, I asked her about it. She told me to contact her if it continued until the following Monday. His stool was a little hard, so she said he should change to a medication called Miralax, twice a day, morning and night.
I hope this helps him a little.

These past few weeks, Hajime has needed to go just when he's having a bed bath, so I always give him a suppository and he goes, but I've thought it would be nice if he could wait just a little. Jamie, who gives him his bed bath, does wait for him to finish, but I know she has another patient so I fell a bit bad about that.

It seems to me that Hajime is gaining weight little by little. Every week when Mary comes, she measures around his waist, and every week, he is the same 28 inches. But I think his face and stomach look a little fuller, so she decreased his nutrition drink from 4 1/2 cans to 4 cans. Besides this, Hajime is also "drinking" his favorite juice, so she said the 4 cans was good.

She said that the fungal cream would be good to put on the skin around his trache, so I will do that and see how it goes.

My husband was not home today for the doctor's visit, so I was worried that my English would sound like nonsense, but I gave it my best. I wonder if the doctor understood me.

(translated by MS)

Apr 4, 2012

Bessy's visit

It's been awhile. It is already April.
In Japan, it is a beginning of a new school year. Spring makes me happy somehow.

As for Hajime, his eye mucus has gotten worse. Not sure that it has something to do with dried eyes.
When it's bad, he can't open his eyes. We will follow up while using eye drops.

Also, the secretion has increased in the tube called kamule in Japan. The viscosity is not too thick but I am concerned that the secretion may cause low respiratory volume. Once it gets low, there will be no going back.

Yesterday, we found a bleeding near the trach. I hope it will not be serious as I applied the medication.

There was a project at the church last Saturday called HEIFER PROJECT. They delivered wood carved cows to every family for donations. Hajime got one today.

Who showed the most interest in the cow? It was Mint.
I am filled with appreciation for the people from the church who care about Hajime so much.
Thank you very much.

Translated by Yoko B.