4th ALS Clinic

Today we had our fourth ALS clinic.

First he had his Speech Therapy.

He lost two pounds again from last time and was 100 pounds.

They said his calorie intake is too low with his current nutrition intake…so from now on we were told to use 6 cans of ENSURE Plus a day.

And up until now we were buying the cans ourselves, but DME should supply us with ENSURE…is the information that’s been given to us so I think I will ask about it.

Next, there were some people to evaluate his breathing ability and they measured Hajime’s breathing. There’s a mouth piece that’s used for this procedure but it seemed like Hajime was having a difficult time because he didn’t have enough strength to hold that mouth piece in his mouth. And this lady that always comes to measure his breathing left, looking a little sad.

Next, a social worker came that was not our usual social worker.

Our social worker that usually comes didn’t try to help us at all. I don’t know if it’s because of our cultural differences or what. But the social worker that came today was very concerned about our mental being and I felt like I was being healed just by talking to her. Even about the Make a Wish Foundation, she said that because he’s been diagnosed at the age of 17, it might be okay so she’s going to inquire for us.

Wonderful!

Next, the Pulmonologist came.

The doctor was very concerned about Hajime’s weight, and he explained to us that if he gains more weight, he may have more strength in his lungs and slow down the progression. And he also said to always use the BIPAP machine at night. If we can’t get used to using it, it’ll be good to practice using it during daytime…is what he said.

He was also concerned about his saliva. Hajime has a lot of saliva and that saliva enters his throat and he coughs from it. He coughs often during the night and when we asked he told us to use the suction machine and get the saliva out.

If he coughs more from the saliva when we use the BIPAP, he needs to have his throat cut open to have a tracheotomy done. I’m actually praying that this will be done at a much, much later time.

But the thing that shocked me the most was about his breathing capacity. We measured his breathing for the first time in November of last year. It was 70% out of 100% then. The next time was in January and it was 60%. This time when we measured it, they said it’s only 30%. Even considering the fact that he doesn’t have the muscles to close his mouth, 30% is a number that is much too low. That worries me very much and it’s heartbreaking at the same time.

And we also asked about boarding the plane to go to Japan, as is his wish to do so. The plane to go to Japan will not be a problem, but he told us that we must take the BIPAP machine with us. And he’s also concerned about colds and influenza, so we must take a lot of precaution. Because developing pneumonia will be ver troublesome…..

Next it was OT/PT. (Occupational therapy / Physical therapy)
They asked about progress,  we answered the usual questions and they examined Hajime’s muscle strength.

This time, the weakening of his neck muscle stood out, and Hajime had his head down the whole time of examination. It seems to be that it wears him out.

We were told…. that it’s better to have the neck collar on as much as possible. She also said that it might be better for him to wear it during sleep too.

His leg muscle is as strong as the last time they were examines. I am truly grateful for this.
But we live on the second floor and when he uses the stairs to go down I have been concerned about some instability so I asked about that. This, when he falls is very dangerous, so it’s better for him to hold onto the railings as much as possible when he come down the stairs…is what was said.

Then it was the main doctor’s examination.

First we asked about traveling to Japan. We need to take some liquids such as ENSURE on board as carry on, but we don’t know how to get past the security…is what we said. About that, the doctor said, ENSURE must be carried on so I will write the necessary documents to hand it to them…is what she said.

And I heard yet another shocking thing. In probably about 4 to 5 months Hajime’s throat will be cut open…It was so straight forward that I almost started to cry. I wanted that to happen as late as possible, so I was quite overwhelmed.

…..which is what I wrote, but I guess I understood the English incorrectly. What was said was that for Hajime, from now on, the thing that we must be careful about the most is for him not to be suffocated. If he has any breathing complications within these 4 to 5 months, the worst case scenario would be to cut him open right then and there, so please be prepared….

From now on, just like this we have to think about what may happen and prepare our hearts. And about that, honestly, it’s very distressful and painful.

Hajime was listening to everything from the beginning to the end in smiles, but as parents, my husband and I had very complicated emotions.

Lastly, we had a blood test and urine test done and we left the hospital.

It was a very bitter and painful clinic.

Translated by Christine Shirota