Yesterday was Mary's scheduled visit so she came over.
Every two months, she does an evaluation to see if he can continue to receive palliative care support, and yesterday was that day.
This palliative care is very good. The care that this team provides is vital to Hajime's future, so I hope they will continue to come.
But I worry that if Hajime's condition stabilizes, he won't be able to receive this care anymore. Hajime's situation is serious enough to qualify him for this kind of service. Mary told me not to worry. But every time she comes for the evaluation, we become anxious.
As for Hajime's bedsores, they have completely healed, so I feel a little less worried. But she did tell us to continue turning him over every two hours. The toes on his left foot are a little red, so she also told us to keep his feet elevated as much as possible by propping them up with a small cushion. Hajime lies on his left side with his legs bent, so I think the redness was caused by that. I must keep an eye on that.
And, his toes have started to stiffen in one direction. It made me realize that it is extremely important to massage his ankles.
Now, for Hajime's eyes, as I have written before, I think there is a limit to how much he can open his eyes. They say that ALS basically does not affect the eyes, but Hajime's eyes do not open very wide, so there are many times when I do not know if he is telling me yes or no. That may be because there are many days when he is in a daze from the side effects of the medications he is taking. Now that he can no longer use his hands and feet, his eyes are very important in his communication, so I wish that he could talk with us more with his eyes.
Lastly, the opening at the base of his neck where his trach is inserted is getting bigger. We need to be very careful about this area, but it is always wet (due to his secretions), so it is not an area we can really keep dry. Mary told us we will have to change his gauze more frequently. We are also supposed to apply a cream as a safeguard, so we must not forget to do that, either.
I am starting to feel more at peace, little by little...because I know that God is always with me.
I am so thankful.
( Translated by MS )