Oct 23, 2013

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.

Oct 15, 2013

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)

Oct 9, 2013

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)

Oct 8, 2013

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)

Oct 2, 2013

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)