August 1st week -

8/1/2012
During the early morning (or last night after 12AM), I heard that the (old) nurse (Code name: E) that we like the least was Alwin's night nurse. I am sure she is experienced, but sometimes if you are too old, your physical skills declines. And this happened against Alwin. Nurse E came to talk to Alwin. Wait... talk? I am sure she didn't read her chart, and if she did, she needed to try harder on yelling... did I not say she's old? There goes one point that she is not capable for Alwin. So... Alwin went to the toilet. His muscles are definitely weaker, and needed a big lift after sitting on the closet. Nurse E said something, I'm not sure if this is hilarious or what, "I am not going to hurt myself, I need to call for help..." and went away. Like WTF? If you are completely not capable or suitable for providing care to a patient, why are you assigned to him or why didn't you refuse to be assigned to him? Something is terribly wrong to either the assigner's brain, nurse E, or the organizer.

Well then enough grief on this side. Apparently the department changes physician every month. So the two doctors/physicians that knew all our complaints and situations departed. And have we got a new one - which I'm assuming this new physician will not completely understand Alwin's situation just by reading his chart. So we probably have to go through all those complaints with him again about the quality of care.

Alwin's eyes are less yellow today. His Hickman line test is out. He does have a bacterial infection on the line - and my decision was right about taking it out. Better save than sorry. This bacterial infection is specifically sensitive to only one type of anti-biotic. And he will be treated with that tonight. His insulins are also now mixed with the TPN, so he doesn't have to get stabbed constantly - except for the finger test for blood sugar.

God Bless Alwin - and to my family and relatives who are spending time with him. I always appreciate your visit and contribution. It proves how much we can be a family to love and to fight.

8/2/2012
According to Mom (as of 3PM), Alwin took a shower today. He also went back to eating now - though not a lot. He had some congee and took the liver pill too.

On the other hand, his Hickman line infection has yet to have a report. So the anti-biotic mentioned last night was something else - probably against his blood infection. This Hickman line bacteria takes usually 2 days to grow, and then they start testing what is it sensitive to.

Alwin seemed tired from the morning shower, walk, and the meal. Every task that he does can easily make him exhausted. So let me kindly remind visitors, please call my Mom or me first before visiting to avoid the timing that he feels like sleeping - unless you just want to be there with him. However, on top of that, since he is into mutliple infections now, it'd be best not to have too many outsider contacts. I will post when it is clear to visit. Thanks all of you that has the thought to come over to visit! Love you all! And don't forget to pray for Alwin!

Well Mom called me for a night update. Alwin seemed hungry and ate the meal that the hospital provided! In terms of his change of status, his blood sugar level is quite at the low end due to the fact that the insulin now is mixed with the TPN. So the nurse wanted him to drink some of those vitamin water. However, that didn't work out fast enough that he had to be injected with some glucose. They are trying to regulate his blood sugar level since the procedure changed.

God Bless Alwin - please pray with me for him, for the friends and relatives who read this blog.

8/3/2012
And of course Mom didn't sleep a lot because of the overnight toilet runs. And on top of that, something happened which I do not want to mention specifically made Mom needed to stay until I arrive - so again, a 60-year-old woman haven't slept for approximately 33 hours (from Thursday 10AM to Friday ~7PM) gets no help and going to drive by herself home. Without enough sleep myself, I had to go take the spot ASAP after work. I called the social worker and told him that we really need a care-aide. And all he said was he couldn't override what decisions the nursing leader or physicians made. Another completely useless service. I tried calling Mom to tell Aunt Marian to drive her instead. But for some crazy reason my Mom has in her mind, she doesn't like to ask for help and be the stupid-looking heroine. Sometimes I think all these problems  are induced, they could've been easily solved by asking for help.

8/4/2012
I didn't get a lot of update today since I left at 12PM and went home to take a nap, but I came back at 10PM to take over my Mom and Dad. Just a small incident that his injection of GCS-F (to make his body induce more white blood cell) was overdue. A nurse came in and followed up everything.

Also his hearing on the right ear seems to be better! Good news!

8/5/2012
Alwin is still bleeding as usual. His muscles are weaker than before. He almost cannot stabilize himself. Mom wanted him to take the Cellton pill after he puked from it last night. As expected, he took it but turned grumpy immediately. He yelled out and told the nurse and Mom to erase the contents of the whiteboard "NOW" - it is filled with some to-do task that can help him with his quality of life and condition of his body, and of course some of them consuming energy and increasing stress mentally and physically like walking laps or playing games. Everything started looking and feeling uncomfortable to him.

He is bleeding. Dark red now. Back to the critical period.

God Bless him.

8/6/2012
I was awaken by Mom's call with a sigh starting the conversation. He had a fever that reached up to 39.7 degree Celsius (That's 103.46F!!) Then he had dark red stools. But he didn't even know he's that sick when he saw the thermometer getting that reading. I guess the pain his guts are giving him overlaps every other things that he is getting extra. The fever gradually went away after antibiotics, which is a relieve.

Due to safety reasons, and to accommodate his privacy, he will be using diapers, double-layered since the stools output could leak over the first layer.

Mom seemed pretty tired today since she didn't take enough rest, both physically and mentally. So she took a nap while I take over stuff until 7PM.

After I depart, the biggest outburst came out. Mom noticed that the nurse tonight wasn't their favourite nurse. Even the nurse herself didn't know her position was changed. Mom started getting really worried because she likes that nurse so much that she can feel safe with Alwin being under her care. Without her being the nurse tonight, she got really frustrated and started yelling and screaming. She cried and yelled at Dad for not being able to be here after 3 days and that no one will start buying her meals or be with her. She stomped the floor, yelled at her highest voice and slammed the room door. Since Alwin was able to hear a bit, he heard started getting really worried and freaked out.

Why was no one ejecting Mom out of the room at this moment...? No one knows that Alwin's mind could be completely affected by this?

She also told Alwin that his nurse tonight will not be his favourite nurse, she yelled at Alwin and said "You ask them why she's not your nurse tonight, YOU ASK THEM WHYYYYYYYYYYYYYYYY!!!" And said "I WANT TO DIE FIRST BEFORE YOU DO!!!"

I don't know the details to it. Alwin didn't know what to say, but added "I don't know what to say. Good luck?"

God Bless Alwin. Please let him stay in the hands of the caring ones...

8/7/2012
I was told to have a meeting again at 1PM at the hospital. So I took off at lunch to join the meeting. Apparently, the time has come. The team has decided that Alwin's condition is worse, to the point where it is too hard, or even impossible, to get better. His liver counts are extremely high followed by the bloody stools. He also got another bacteria infection in his blood again. With all these, the team has made a decision that there are nothing to be done. His time is a few days left. So we have an agreement on the procedure as following:

(1) Doctor will tell Alwin what is happening.
(2) We are given two days to see what Alwin wants
(3) Starting the third day, his antibiotics and steroids will be taken off gradually
(4) Within fastest 12 hours after the antibiotics and steroids are taken off, they will also stop the blood supplies
(5) He will slowly be into a sleep mode after fastest 36 hours of off supplies

For those who wants to see him and talk to him, please call his number 778-892-0038. Whoever is there will pick up the phone and ask if he's available to be paid a visit.

In the evening, I had a chat with Mom to see what Alwin thinks. He thought he's completely fine and he wants to be maintained with constant supply. His stools are brown, he can walk to the toilet himself, he didn't press the hydromorphone button as much, and he went to the toilet less. However, this didn't override what the doctor decided. Tomorrow I will have to talk to the quality care office again to see what they can do to override this.

Brother, I know you want to live on and you are afraid of dying. We as a whole family will do whatever you wish for. May God be with you.