Hajime's nose has been very runny again since yesterday and it is green.
He has had a low grade fever all day today. I am worried.
And there is a lot of secretion from his trache.
I'm guessing that he probably has another infection...
A fever and runny nose...That means it's probably a cold.
Tomorrow is Mary's day to come so I'm planning to talk to her about it.
The other day, I posted an entry called "The Respirator Malfunction". When the respirator malfunctioned and Hajime was having trouble, we put in a call to the 24- hour palliative care hotline. But no one picked up. It went to voicemail, so I had to leave message. I waited for a call back, but no one called, not even the next day.
Palliative care is in the same group as hospice care, so I don't understand how they can't respond to an urgent call.
What happens if the patient is in danger of dying during that time?
There was no call for two whole days. It's supposed to be a 24-hour hotline...
Then we called Kaiser's member service number.
I think that they will call in a few days, but I was very discouraged because they're supposed to be a team that treats life and death situations.
When we had a problem with the respirator, we called the emergency number of the company that is in charge of the respirators. They came right away even though it was a day off, and they followed up. The kind of responses we get at this company varies a lot from person to person but that day, it happened to be someone named Jeff. He is very good. He came to check on the respirator often. We felt relieved because he came right away to bring a replacement respirator.
If we hadn't been able to get in touch with anyone, I wonder what the situation would have been now? I get scared just thinking about it.
I hope the palliative care team will look into why this happened and take care of it.
(translated by MS)
Sep 6, 2012
Sep 4, 2012
The Respirator Malfunction
It has been a while since I last wrote.
I wonder what Hajime is thinking every day, and I feel like I almost can't breathe.
Lately, there is a lot of the canned nutrition left in his stomach, so we can only feed him two cans a day.
I think that's why he is losing weight quickly. His bones in his lower back are sticking out so much that I can feel them. I don't think this is good and I'm worried. So I'm giving him at least three cans of nutrition.
But Hajime has started to hate the feeding. He must know what would happen if he stopped doing the feeding.
I think that he would want to fight hard to live...
Sometimes I have to respect his wishes.
It's a scary and difficult situation.
However, he still wants juice so I am giving it to him.
I feel a bit anxious every day. I look like I'm fine, but inside I am filled with anxiety.
Oh, and something was wrong with the respirator today. The breath count went up to 34 in one minute. (Normal is 14-16).
So Hajime was breathing hard. Fortunately, we have a backup respirator so we immediately replaced it. He started breathing better, but it was scary.
We don't know what might happen. It was the RT's day off, but we had him come later and he replaced the backup respirator with a different one.
What was scary this time was that the alarm did not go off. When the tidal volume decreases, the alarm is supposed to go off. But even when the breath count went past 30, it did not go off. We need to talk about what to do if this happens again.
At least Hajime did not seem to have suffered.
(translated by MS)
I wonder what Hajime is thinking every day, and I feel like I almost can't breathe.
Lately, there is a lot of the canned nutrition left in his stomach, so we can only feed him two cans a day.
I think that's why he is losing weight quickly. His bones in his lower back are sticking out so much that I can feel them. I don't think this is good and I'm worried. So I'm giving him at least three cans of nutrition.
But Hajime has started to hate the feeding. He must know what would happen if he stopped doing the feeding.
I think that he would want to fight hard to live...
Sometimes I have to respect his wishes.
It's a scary and difficult situation.
However, he still wants juice so I am giving it to him.
I feel a bit anxious every day. I look like I'm fine, but inside I am filled with anxiety.
Oh, and something was wrong with the respirator today. The breath count went up to 34 in one minute. (Normal is 14-16).
So Hajime was breathing hard. Fortunately, we have a backup respirator so we immediately replaced it. He started breathing better, but it was scary.
We don't know what might happen. It was the RT's day off, but we had him come later and he replaced the backup respirator with a different one.
What was scary this time was that the alarm did not go off. When the tidal volume decreases, the alarm is supposed to go off. But even when the breath count went past 30, it did not go off. We need to talk about what to do if this happens again.
At least Hajime did not seem to have suffered.
(translated by MS)
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