A Glimpse of Hope

Yesterday, Rachael, a nurse practitioner from palliative care, contacted me about my mother’s case. To put me at ease, she asked me personal questions about my mother. Where was she born? What does she like to do? Where did she work? Does she like to live in the U.S. or Vietnam?

I know for sure my mother wouldn’t want to live anywhere in the world but here. She believes the U.S. has the best healthcare system in the world. And yet, when she is at the most critical time of her life, the system fails her. I shared with Rachael about the experience we had in the past week and my concern that the medical team had given up on. She assured me that was not the intention and she set up a conference call to talk to my sisters and I about my mom’s condition.

In our conference, I emphasized the importance of understanding what my mother wanted instead of what she thought she wanted. For instance, she refused to take Remdesivir because the doctor told her through the interpreter that Remdesivir could be bad for her liver and kidney. She did not understand that if COVID took over her lung, her liver and kidney would be no good. She refused the ventilator because she didn’t realize that she would die with not enough oxygen. After I explained to her the outcome of her decisions, she told me exactly what she wanted.

Rachael finally understood where I was coming from. She heard me loud and clear. I was not making the decision for my mom. I was helping her to understand her choices so she can make the decision for herself.

At this point, the medical team understands that we want to go forward with the treatment. If her body continues to fight, let her fight for her life. If her body gives up, she will go. The medical team has done what they could for her.

Tested Negative

I spoke to Carly last night to get an update on my mom. Carly was wonderful. Night nurses seemed nicer because they were less busy than the morning nurses. In the morning, the pulmonologist told me she needed 100% oxygen. I requested for her to be proned. At night, she only required 65% of oxygen. Proning worked.

I requested Blue Jeans to see my mom. I talked to her for a while and let her listen to the Buddhist chant, “Nam mô a di đà phật.” I watched Carly change the position of my mom’s arms and put a warm blanket over her back. I let the video continue until I fall asleep.

Later on today, we will discuss with the Palliative Care team to see what we need to do next. Is there a path forward if we keep her on the ventilator?

I miss my wife and kids. I miss all the wonderful activities we’ve done together. I miss rollerblading, ice skating, biking, and just running around the playground. My wife and my mother-in-law must be exhausted with the four highly energetic boys. I am so grateful for them at the time I needed to focus on my mom.

I am grateful for my sister’s ex-husband. He cooked and brought food over for us everyday. I need all the strength to pull through. I’ve been taking vitamin D, zinc, and apple cider vinegar, which comes in pills. I am not sure how effective they are compared to the liquid form. I’ve been taking walks despite the snow. I am mentally drained, but physically fine. Even without coffee, sleep has been hard. I still wake up in fear and can’t get back to sleep. I have not touched a drop of alcohol.

I have tested negative for COVID-19. Despite living with two positive COVID patients and had close contact with one, I managed to dodge the bullet. Mask works. Please, please, please wear your mask and save lives. My mom’s situation could have been avoided if we have done our part. What we can do now is to stop the spread.

I will be spending this Christmas and New Year alone and away from my kids, but I hope that won’t be the case in many holidays to come.

Thank you for reading this blog and sharing your support. I wish you a safe, happy holiday season. Take good care of yourself and your loved ones whether being apart or together.

Fuck You!

Fuck you for taking my dad. Fuck you for trying to take my mom too. Fuck you, COVID-19. Fuck you, the-worst-fucking-year-of-my-entire-life. Fuck you, 2020!

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.

Medical Doctor

My nephew Eric is a straight-A student and he has a passion for design. I used to believe that you have to follow your passion, but I would like him to go into the medical field. Being in a life-and-death situation, my design passion is utterly useless. The decision-making process has been extremely hard. I never had to face something like this until now and I don’t have the experience or the expertise to make these difficult choices.

No one dies if I picked a serif over a sans-serif typeface. No life is on the line if I picked a darker or lighter shade of blue. No one cares if the logo is too big. I am at the point where I am too tired to fight for design. If my superiors want orange, I’ll give them orange. I am not going to bother explaining to them why, from a design perspective, they should go with red instead. I would let them have it.

In a life-and-death crisis, one wrong decision could make me regret it for the rest of my life even if the outcome won’t change. To get the medical expert’s advise, I have to reach out to a friend I haven’t seen in twenty-something years, a wife of a friend I have never met, a sister-in-law of my niece I met once, a friend’s husband, or my wife’s cousin. I am very grateful for their generosities and kindness, but I also feel extremely bad. I wonder if they have to give medical advice to family members and friends all the time. I wish I could return a favor. If any of them need a website, I will do it for free. That’s my offer.

I told my wife that I hope at least one of our four kids will become a doctor. Fingers crossed!

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.