Medical Advisor

Last night I asked Kevin, my mom’s nurse, to set up Blue Jeans so I could see my mom. She was sedated and could not hear me, but I talked to her anyway. Kevin brought the camera closer to my mom so I could see her clearer. I put on Buddhist chant for her. We both listened as I fell asleep.

This morning I spoke to a new pulmonologist. I asked him to spell his name and he wondered why. I just wanted to get his name right. He gave me a prognosis. I asked him lots of questions I have been prepared from talking to my doctor friends. He ran out of time and let me go. From our conversation, he emphasized the important aspect of decision-making. Ultimately, the decision is not what we want, but what our mom wants.

I completely understand his point. I have been struggling with making the decision for what she wanted and not what we wanted. The issue is that she did not fully understand what she wanted as well as the consequences of her decision. As her son, I wanted to make sure she had a full comprehension of what she wanted. As medical doctors, they should do the same for her. Unfortunately, I have lost my trust in them in the ways they have communicate to us.

They gave us the two options, but they already made their mind about the option they wanted us to choose. It would be much more helpful if they let us know whatever options we make they will support us all the way. If we have their full support, it would be much easier for us to help make our decision for our mom.

Because I am not in the medical field, I do not understand everything they were telling me. I needed medical advisors to help me out. That’s why I had reached out to friends and family members who are in the field to help me out. I am grateful for their time, patience, and experience. They understand both the medical procedures as well the human compassions on our side to help us make a decision that we won’t regret. That is the way it should be.

Our healthcare system is broken. It needs to be fixed. We need to do something about this. I am grateful to those who had sent messages in regard to my mom as well as their comments on this issue.

A Fighting Chance

It was 1:30 am and I couldn’t sleep. I kept thinking about my mom and the way she is being treated at the hospital. Because she has COVID, the hospital does not allow visitation until when she is near the end of her life. It has been so difficult to make decisions when we cannot be there by her side.

At 3 am on Wednesday, I received a call from a resident doctor telling us to come in because she believed my mother was near the end. We rushed in to see mom. She was happy to see us. She told us that she was ready to go home and asked me if I brought any diaper for her. I told her that I would love to take her home, but she needed oxygen. Within the machine she wouldn’t be able to breath. I held her hand and asked her if she would like to have the doctors do everything they could to treat her. She said yes. We stayed for a while with her and she told us to go home to rest. She knew we were exhausted. We left the hospital and later on the day I called her doctor to request a ventilator. We updated her status to full code.

Friday afternoon, I received another call from the nurse telling us that she is near the end of her life and if we would like to take the ventilator out, we could visit her for the last time. We arranged to meet. Once again we came in and she still was still responding. I asked her if she was hurt or uncomfortable, she shook her head. I asked her if she would like to continue to get treatment, she nodded her head. When we decided to keep her on the ventilator as she wished, the nurse told us that the only reason they let us in was because she was near the end of her life.

I don’t blame them for being confused. My mother has a mind of her own and she changes her mind all the time. What has been consistent is her willing to fight. She refused to take Remdesivir because she was told through an interpreter that it can cause damage to her liver and kidney. She didn’t want to get on the ventilator because she believed she could fight COVID at home. With lots of rest and savory food she eats at home, she could beat it. She did not realize how critical she was and it was hard for us to communicate that over the phone. When we saw her in person and explained to her the situation, she understood right away and she was willing to fight.

I kept thinking how strong she has been just with the past week. The doctors told us twice that she was near the end of her life and she is still fighting. It was 2:30 am and I still couldn’t sleep and I hadn’t had a drop of coffee since the day I came here from Virginia. I needed to be able to sleep to clear my mind. Every time I woke up, I felt the chill running through my bones.

I picked up the phone to call her nurse. It turned out that 2:30 am in the morning was the best time to reach a nurse. I talked to a gentleman and he gave me a brief update. I asked him to set up Blue Jeans in her room just so I could see her. Although she was sedated and couldn’t hear me, I still talked to her. I told her to rest and to let her body heal, but to keep on fighting. I sang “Lòng Mẹ” and drifted to sleep.

Denial of Care

Listening to Sarah McSweeney’s story about her denial of care in the hospital broke my heart. My mother is getting the same denial of care from Penn Medicine Lancaster General Health. They have given up on her. They wanted to take her off the ventilator and let her die instead of continuing to treat her.

Yesterday, they let us in the ICU to say goodbye to our mom for the last time. When we arrived, mom was still alert. Her mind is still strong. Her grip is still tight. She has been a fighter all her life. There’s still hope in her eyes. We spoke to her and asked her if she is willing to fight, she nodded her head as tears rolled down her eyes.

We sat down with the ICU doctor and nurses to discuss our options. The first option is to take her off the ventilator and let her die quickly. The second option is to keep her on the ventilator and to continue with the treatment. Although they presented us the options, they already determined that we should let her die.

When we decided that we would like to keep her on, they quickly asked us to leave the hospital. The nurse asked me to give them the consent to prone her, to stick a needle down her neck, and to do all type of invasive procedures on her. I knew she was trying to intimidate us because I already gave my consent to have a PICC line. My mother doesn’t need both a PICC line and a needle down her throat. Proning is fine if my mom needed it. I am not sure what other invasive procedures she was referring to. As it turned out, she never gave me any paperwork to sign. I reminded her that I have authorized full code for my mother. She said they will call me to get the consent. They never called.

We went home in disbelief and disappointment. The physicians and nurses at Penn Medicine Lancaster General Health don’t seem to have any compassion for a human life. My mother’s life is in their hands and they just wanted to get rid of her. I understand her condition and her surviving chance is very slim. If they give all they can and she won’t make it, we will accept the outcome. Giving up on her when she has a fighting chance is just cruel and inhuman.

I am not sure if sharing this information will have any repercussion on my mom, but they are now doing the bare minimum for her. I have been waiting by the phone all day long to get an update on her condition, but no one had reached out to me. I called in and I could hear the gasp from the staff telling each other, “It’s the family that came in yesterday.” The nurse didn’t even bother to give me an update. She asked me, “What do you want to know?” Of course, I wanted to know everything about my mom. Why else would I call? Her respond was, “She is still the same.”

When I requested to have the attending doctor speak to our family medical advisor, the nurse sounded amuse. She put me on hold, but I could still hear her saying, “He said something about a medical advisor.” She came back and told me that the doctor won’t have time to talk to everyone. I understood that and I said the doctor won’t need to talk to me. He would just need to give a prognosis to our advisor. Because our advisor is a medical doctor, the conversation from doctor to doctor would be better. Our advisor who we trust can help us make our decision. Even that seemed like too much to ask for a dying person.

We are going through the darkest time of our life and the physicians and nurses at Penn Medicine Lancaster General Health aren’t make it easier for us. I am deeply hurt and appalled. I hope there are still healthcare workers in the hospital who still have love, compassion, respect, and the willingness to treat sick people. This is America and we are better than this.

Keep Fighting, Mom

You have been a fighter all your life. We haven’t given up on you, mom. We are supporting you all the way. Please fight this through. We are all here for you. Everyone is praying for you. We are thinking of you. We love you.

Decision

Every time the phone rings, my heart sinks. Every time I wake up, I get a chill all over my body. Every time I see her silk shirt hanging on her dresser, I cry. I am going through the darkest time of my life. I am horrified and I don’t know if I can pull it through. I am supposed to be strong, but I am not.

The thoughts of losing her scare me. This is the woman who devoted her entire life to me. At the critical moment of her life, what can I do for her? Am I making the right decision for her? Does she understand the seriousness of her conditions?

The past week has been hell, especially the past two days. I sobbed like I have never been sobbed before. Fortunately, I have dear friends and family members I can reach out to help me make my decision for my mom. It had been a daunting task, but it helped me see thing from a different perspective. The trauma has yet to end, but at least I can live with the outcome.

Về nhà

Hôm qua được trò chuyện với má qua video. Da mặt mẹ vẫn hồng hào. Mẹ hỏi ngay chị đã khỏe chưa? Mẹ rất lo cho chị và Eric.

Mẹ nói mẹ muốn về nhà. Mẹ không muốn ở bệnh viện nữa. Mẹ quá mệt mỏi rồi. Chỉ nằm một chỗ không được ăn cả ngày, mẹ bị y tá và bác sĩ quấy nhiễu nên mẹ muốn đến đón mẹ về. Mẹ còn dặn nhớ mang tã theo.

Tôi ngậm ngùi nói với mẹ rằng con sẽ đón mẹ về nhưng mẹ phải thở được bác sĩ mới cho mẹ về. Mẹ chỉ muốn về với con cháu cho đến giây phút cuối. Chúng con sẽ tôn trọng quyết định của mẹ. Mẹ nghỉ ngơi nhé.

Kindness

I continued to read Obama’s memoir until midnight waiting for a call from the hospital, but my phone didn’t ring. That must be good. I called the nurse to get some updates. Her breathing had improved; therefore, they lowered the Vapotherm. An infectious disease doctor examined her and prescribed Rocephin for her. I slept better last night with tremendous hope.

As I was driving back to Lancaster last Thursday, I was desperate for some medical advice and I immediately thought of Phú. We knew each other way back when we first came to America. We lost touch for a while, but then reconnected through Facebook. I didn’t know if I should call out of the blue because we haven’t been in touch for so long, but I reached out to him anyway. I figured it wouldn’t hurt. I am so glad that I made the call. He has been so kind with his time and knowledge. He has called and texted to get updates on my mom’s status. I am both thankful and feeling guilty at once.

Carol is one of my sister’s family dear friends. I have heard my mom and my sister talked about her as Heather’s grandma. Heather is around Samantha’s age. Heather used to live across from my sister’s previous house. Carol visited her granddaughter and she must have loved Sammy. That was how they had been closed. On Friday, my sister gave Carol my phone numbers. I have never met Carol, but she has been such a caring person. She calls me everyday to get an update on my mom, my sister, and my nephew. She told me stories about how my mom always offered her tea and Asian goodies every time she came by the house. She treats my mom like her older sister. She is going through a tough time herself. She is taking care of her son who is in his 50s and dealing with chronic depression. She misses her husband who died in 2014. They had been married for 49 years. I loved her stories and I wanted to console her as well.

I am grateful for friends like Phú and Carol. Their kindness touches my heart.

Mẹ của tôi

Sáng nay gọi điện thoại cho mẹ. Mẹ bắt máy và lời đầu tiên mẹ hỏi, “Mầy có đưa con Thơm đi bệnh viện chưa? Ở trong đây có đầy đủ thuốc, máy móc, bác sĩ, và y tá để lo cho nó.” Tôi trấn an mẹ, “Má yên an tâm đi. Con đã gọi cấp cứu cho chị rồi và họ đã khám cho chị và cho biết chị không cần phải nhập viện từ từ chị sẽ khỏi.”

Mẹ bật khóc và nói, “Hai tuần nữa mầy về rồi không có ai lo hết.” Tôi không thể nào cầm nước mắt tôi hứa với mẹ, “Má ráng hết bệnh về với con. Con đang ở nhà mong đợi má về. Má cố gắng qua khỏi nhé. Con sẽ ở lại chăm sóc cho má. Má phải mau lành bệnh nhé.” Mẹ vẫn khóc và đáp, “OK.” Tôi cố gắng không khóc ra lời và nói, “I love you.” Mẹ đáp, “I love you, too.”

Đầu óc mẹ vẫn còn tỉnh táo con rất mừng. Mẹ phải hồi phục để về với con nhé.

Cố gắng lên, Má

Má ơi, cố gắng vượt qua biến cố này nhé. Cố gắng bình phục để về đây chung vui mùa Giáng Sinh và đón mừng Tết Tây với con. Con mong đợi má tin vui của má từng giây. Những người thân và bạn bè ai cũng mong đợi má mau qua cơn ác mộng này.

Con xin lỗi má. Má đã gọi con về để lo cho má nhưng giờ đây con cũng không làm gì được cho má. Con biết má không muốn nằm bệnh viện nhưng với tình hình của má con không thể nào không gọi cấp cứu. Để má ở nhà đến ngày hôm nay sẽ nguy hiểm đến tính mạng. Con không còn lựa chọn nào khác.

Má tha thứ cho con nhé. Tuy không thể gặp được má nhưng con vẫn liên lạc với bác sĩ và y tá để theo giỏi tình hình của má. Con cũng ráng giữ gìn sức khoẻ để đợi má về. Lễ mùa đông năm nay má về với tụi con nhé. Con nhớ má lắm.

She Can’t Breathe

The phone rang in the middle of the night from the hospital. I was afraid to pick it up. A nurse informed me that my mom had moved to a closely monitor unit. She had trouble breathing. Without the Vapotherm, her oxygen level dropped to 70%. They cranked the device all the way up and her oxygen was at 95%. If she continues to get worse, they will put her on the mechanical ventilator. I am hoping and praying that won’t be the case, but the odds are against us.

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