Lessons Learned

Thank you for following me through the 20 bleakest days of my life as my mother fought and lost her brutal battle against COVID-19. I wish I didn’t have to go through it. I wish I didn’t have to write about it. By sharing my experience, however, I hope that people will take this deadly virus seriously. The pandemic is far from over. In this last post on COVID-19, I would like to share the lessons I have learned. God forbid, if it happens to you and your loved ones, I hope you can use these tips to help you navigate the crisis.

If you think you have been exposed to COVID-19, quarantine yourself. Do not do anything for your parents, especially if they are in their 70s and 80s. Ask someone else to take care of them. That alone can save their lives. If you think your parents have been exposed, get them tested. If they tested positive, started coughing, with oxygen level below 92%, bring them to the hospital to start the treatment immediately to prevent them from getting pneumonia. Once they have pneumonia, they will be in serious trouble.

If you were not infected with COVID-19, you could take care of your infected parents and still keep yourself safe. Just stay calm and take all the precautions. Wear double masks (N95 inside and blue mask outside), face shield, latex gloves, and a trash bag over your clothes. To keep your immune system strong, take Vitamin D3 and Zinc. If your parents were too weak, help them put on their mask. My physician advised that I could only stay with my mother no longer than 15 minutes in her room, but that was impossible. Every task took 30 minutes to an hour. She coughed on me when I tried to get her to sit up on her bed and I couldn’t let her go. In addition to being close contact with my mother, I lived in the house with two other COVID-19 victims. I worried that I put myself at risk, but taking every measure worked. I tested negative. If you have to take care of your parents with COVID-19, do it safely. They need you.

If your parents have to be admitted to the hospital, contact your family members or friends who are in the medical field. Having an expert on your side helps you make better decisions for your parents. I was fortunate to be able to tap into a family member and a few friends who were willing to help. When speaking to your parents’ attending doctors, have your “family medical advisor” listening in to help ask medical-related questions or clarifications. Ask your “family medical advisor” to explain the latest treatment developments such as Remdesivir, Dexamethasone, Convalescent Plasma, and proning. Ask your “family medical advisor” to explain the pros and cons of the mechanical ventilator as well as tracheostomy. My “family medical advisors” even came up with a list of questions for me to ask my mother’s attending doctors:

1. Can we get a list of her medications?
2. Was she on Remdesevir or Convalescent Plasma? For how many days?
3. Is she still taking antibiotics?
4. What are her labs (white blood cells, inflammatory markers, etc.)?
5. Is it still possible to keep the ventilator going? Why or why not?
6. Is she uncomfortable? Is she suffering?
7. Does she require high pressure and can’t keep her level high?
8. Does her brain get enough oxygen?
9. Does she have multiple failures? Liver, kidney, heart?
10. If you think that you have done all that you can for her, can you help us transfer her to another hospital that willing to treat her?

The last question was just incase we needed to transfer, but most of the hospitals were also overwhelmed. If you know physicians working in the hospital where your parents admitted, reach out to them. When we changed our mind and wanted to put my mother on the ventilator, I could not get a hold of her attending doctor at 11 pm. Luckily, when I reached out to a friend’s spouse who worked in the hospital, she happened to be covering my mother’s unit that night. She took care of transferring my mother into the ICU immediately. She read her chart and told me about my mother’s condition. She also notified me that my mother had refused to take Remdesevir (more on this later). Although she thought it wouldn’t help, she said, “It is fair to give the ventilator a try so that you won’t regret it.” I wish she was my mother’s attending doctor.

It is absolutely crucial to be cooperative with the medical team in the ICU. Your parents’ lives are in their hands. Even if they strongly advised you to pull the plug, you don’t have to be combative with them. You don’t have to make your decision right away. Just take in all the information they provided to you and think it over with your family. If you feel that they were giving up on your parents, get the palliative care involved. Just remember that whatever decision you made for your parents, you came to the conclusion based on your love for them. Don’t beat yourself up if the outcome came out the same. You had done all you could for your parents.

Your goal was to help your parents understand clearly what they were getting themselves into so they could make their own decisions. This is a challenge during the pandemic because you can’t be with them and it is even more challenging if your parents don’t understand English. Yes, they have interpreters, but interpreters’ job is to interpret what the doctor said, no more no less. They were not there to explain to your parents about her condition. In my mother’s case, the doctor wanted to start her on Remdesevir so he asked her if she wanted to take it. He warned her that this drug could harm her liver and kidney; therefore, she refused to take it. If I were in the room, I would explain to her that if she doesn’t take this drug her lung will fail and she will die. Her liver and kidney would be useless if her lung failed. I didn’t know she refused this drug until my friend’s wife who was covering her unit told me. She asked me if I still wanted my mom to get started on Remdesevir, but it was too late. She was no longer qualified as her organs started to fail.

It is absolutely crucial that you request to have you included in all of your parents’ decisions, especially if your parents’ English is limited. Initially, my mother refused to get on the ventilator and I honored her wish until later on I found out that she did not fully comprehend her condition. She told me that she wanted to go home, eat some hot food, get some rest, and she would recover. I had to explain to her that was not the case. If she were to go home without an oxygen machine, she would suffocate and die. The reason they didn’t discharge her from the hospital was that she could not breathe on her own without the Vapotherm and the Vapotherm was already maxed out. I explained to her that either she was going to die slowly on the Vapotherm or moving forward to the ventilator. She agreed to move to the next step.

In retrospect, she might have made the right decision based on her own knowledge. What she didn’t know couldn’t hurt her. We took the chance and she fought on until there was absolutely nothing left. She held on as long as she could for us. I was proud of her and she will always be my hero.