UCLA ALS Clinic
Today we had an ALS clinic at UCLA. Last time was in February, so it’s been 3 months since our last examination here.
First, it was the speech therapist.
How much nutrition intake and what is his weight? The answer to that is …
3 times daily, 2 cans at a time (1 can amounts to 350~375 kcal). And his weight today was 98 lbs.
This is the new nutrition Neutren.
This has been our nutrition that we’ve been using. ENSURE Plus.
He did lose a little weight, but I think it’s because he’s vomited the new nutrition that didn’t sit well with him. But we received a large quantity of it shipped to our home, and since we can’t exchange it, we are going to have to use it little by little to get him used to it. SP said that it’s okay to do less at a time but more frequent. She then checked how the device is being used and it was over.
Next, the OT/PT came.
It started with a talk about Hajime’s collar and were recommended of a particular collar, “This one is good.” The Headmaster Collar. And she wrote a prescription for it also.
Along with Hajime’s muscle strength declining and because of the heavy weight of his left arm, when he walks or sits, his left shoulder drops. Because of that it became a fixed posture and he’s starting to not be able to turn his head to the right. So we were told to put a tape on a rolled up towel or a bath towel under his left arm to lift it, at least while he’s sitting. If the left arm is raised, the neck will naturally be moved back in place.
Next it was an examination by the pulmonologist.
He used the usual machine to measure the breathing capacity as usual. Hajime was giving all his effort into inhaling and exhaling.
Last time, when he was measured it was 58%.
This time was very low, it was 27%.
He was measured 3 times, the first was 23%, second was 27% and the third was 22%. The amount of oxygen was 95%, and we were told that it’s fine as long as it’s over 90%. But he said that when we go to Japan it’s better to take an oxygen mask. He said there’s one that could be connected to the BIPAP machine, so I think I’m going to look for it.
Next it was the main doctor.
As expected, she was concerned about his breathing capacity and she brought up tracheotomy. The doctor recommended doing it before going to Japan. I guess she’s worried about complications that may arise while our stay in Japan. We thought, “The time has come”…and it broke our hearts. We are planning to go to Japan in July, and there’s still about a month and a half left. From the speed of the progression, it is definitely within the possible realm, and we, and of course Hajime are at a loss.
This time at the clinic, several apprehensive issues came up, so I’m thinking that I have to re think about the scheduling of our trip to Japan.
Hajime’s the one having the toughest time…but we were just stunned…
I’m thinking of having a deep long talk about what to do from now on.
Translated by Christine Shirota (American English)