Managing of the Medicine?

The maker of tobii came today and made many adjustments.
There’s a stand for the bed, but it was too low and we thought that it can’t be used on the bed, but we found out that we can use it in a different way, so Hajime was able to start using it.

Using the eye system, he was able to enjoy Youtube, take pictures and have conversations.
He still needs some time to get the hang of it, but seeing him being able to talk to the nurse using tobii, I felt glad.

After that, Paul came to the hospital.
He brought him a wonderful gift and Hajime seemed really happy!
He has a special appreciation of gLee and he still hasn’t taken off the wrist band.
Thank you so~ much for the wonderful present!

Every Friday is when we exchange the trach tube.
I headed for the hospital after I picked up the kids from school, so it was dusk.
Right after I arrived, Hajime prepared his heart for it right away and when we were ready to go we called the RT.

Hajime was supposed to take some medication from 30 minutes before the procedure starting from this time because he has so much fear. So we asked for the medication. But no matter how long we wait, the medication didn’t come,,,and when we asked the nurse, she just said “We’re looking for it now” again and again. The time was past 6 o’clock, but the medication still didn’t come.
Well, it seems like the medication that they had ordered came to the hospital once, but they sent it back. And they ordered for the medication to be delivered again…is what they said.
After that, the RT came in to tell us that it was scheduled to be delivered at 7pm.
But it didn’t come on time.
It didn’t come after 8 o’clock, it didn’t come after 9 o’clock.

I question this.
They knew that Hajime’s scheduled to exchange his tube today from this morning, so why did they realize that they didn’t have the medication until late in the day? Hospital management isn’t done properly. I don’t think this type of mishandling should happen in a medical facility. Management of medicine is critical! Even though Hajime felt scared, he finally decided to do it, but because they didn’t have the medication, we couldn’t exchange the tube.

I want to hurry up and take him home, but no such plans in the near future.
Unless we get that medical…..


Translated by CS

Speech with Eye-System

Oxygen had been suddenly decreased last night again, and we rushed for suction. It happened about 2 hours after he fell into sleep. I am worried about this to happen again… We spoke to Hajime that we would do suction every 2 hours through the night as the therapist suggested. He consented and smiled, even though it shall keep bothering him and not allows him to have a deep sleep.

It is not confirmed yet when we start this, but hopefully this helps Hajime keep breathing.

Today’s PT was conducted in combination with ST, and the speech-therapy with staying on a wheelchair started. We brought a stand from home to hold “tobii” and use it. It worked out really good!

By catching Hajime’s gaze, this can make a long sentence and even speak over. Now, we make good use of the eye/ gaze system. Hopefully, we can utilize this system better after some practice.

Hajime played the video-game afternoon. He can play with his toes. This is really amazing. As you may know, there are many buttons laid on the Xbox’s controller, which is small and the palm top size.

Without looking at these buttons, he can control only by relying on his toe’s sense. He also changed the button setting/ functions via the set-up menu to make a good fit to him.

In the evening, his daddy and brother came to the hospital after the school and Ryo & Hajime played together. I am very impressed.

There is one concern… His heart rate was increased up to 130 when he played the game and very much excited… So I cannot let him play before he goes to bed…

In these days, Hajime is getting much better to use his toes.
I saw the blog written by ALS patient a while ago and learned the blog was updated only by toes still working. Today, Hajime is doing this! More than anything else, I am so happy that Hajime now has something interested that shall help him keep energized.


Translated by RM & YM