The phone rang.
“Are you with Anuradha?”
“Yes. Is everything okay?”
“She’s just gone into cardiac arrest. Please come to the hospital immediately.”
My heart stopped, figuratively. Her’s did, literally.
It had been two days since she had been moved out of the COVID ICU. She had a nice isolation room at the end of the regular ICU with a view over the city. But she had been struggling to breathe and constantly asked for the nebulizer. She was on non-invasive ventilation most of the time.
I rushed to the hospital with my heart in my mouth. I did not know how I made it there, I called my friend Adi and told him to come there. I also asked my cousin to make his way there. I left Daniela a voice message and told her what had happened.
As I reached the ICU the doctor asked me to come inside. My mom was lying there knocked out on sedatives. She had been intubated. There was a pipe going through her mouth into her lungs, the other end of this pipe was connected to a ventilator. Her eyes were open but she wasn’t really conscious. My eyes teared up seeing her this way but I had to stay strong.
The doctor told me that on the way back up from the CT scan her left lung had collapsed. Because of this sudden event her heartbeat became very feeble. They had to perform CPR for 30s to revive her and immediately intubate her. They had effectively saved her life.
But here she was, now under the influence of powerful sedatives and alive only because a machine was helping her breathe. They asked me for a large number of signatures: intubation, central line, strong sedation, bronchoscopy, the list went on.
The next morning I met her primary physician. He said that they did a bronchoscopy and that her lungs had filled up with debris and due to this her left lung had collapsed. He explained to me that the heart went into “shock” and stopped so this is why she needed CPR.
At this point the Pulmonologist was also involved. He told me that she had a very poor prognosis. She’s suffering from post COVID-19 complications and that chances are she will not make it. Also, chances of a full recovery are very low. She will have long term sequelae. I did not know what this word meant.
I couldn’t breathe. The adrenaline rushing through my body was pushing me forward. But I felt like I was working without my senses about me. I just had to make calls and decisions but I did not really know what I was doing. I researched everything. All I did all day was sit around reading about COVID-19 cases. There is a lot of literature out on the internet at this point about COVID-19. Tons of case studies can be found at the click of a button. So I tried to alleviate my anxiety by reading up as much as possible. Every link on Google related to COVID-19 turned a familiar purple.
Sequelae means after effects. When he said sequelae he meant that she may not make a full recovery. Even if she gets out of the ICU she may need to stay hooked up to a ventilator for the rest of her life, she may not be able to walk, or talk, she may have neurological damage due to her brain not getting enough oxygen, she may have a very poor quality of life. These things don’t necessarily just happen to COVID patients. Most patients with ARDS – acute respiratory distress syndrome – will come out of the ICU with long term weakness that sometimes takes years to resolve, and often never does.
I told myself to adjust my expectations. One thing at a time. The first and most important thing is that she should be alive. Then we’ll deal with the rest.
The next days were a blur with changing ventilator settings, hoping for improvement but seeing none. They asked me to do a tracheostomy. This involved making a hole in your throat for the ventilator to be connected. If the medical team foresees longer term ventilation as a probability this is usually recommended. Of course, once the trach is in, you lose your voice because all air bypasses your mouth and vocal chords. My mom loves to talk, so it made me really sad to consent to this. But I had read that patients prefer having a trach to having a huge tube shoved down their throats. And in any case, they cannot talk with the tube in their throats. The trach also reduces the chances of ventilator induced pneumonia and makes it easier to wean patients off the ventilator. So reluctantly, I said yes.
My mum celebrated her 68th birthday in the ICU. High on drugs and hooked up to the ventilator. I brought some cake for the nurses and sang happy birthday to her. I don’t think she really heard me. She looked out of the window and tears rolled down her eyes. She was being given a constant fentanyl infusion for pain management.
On August 23rd I got a call from the ICU. She had gotten worse. The ventilator was failing. They had cranked it up to 80% FiO2 and her oxygen saturation was still at 85%. They said they would need to prone her. Proning is a last resort technique where they flip you onto your stomach. The lungs are at the back of our bodies so this helps the lungs open up a little bit more. But for this, you need to be completely knocked out. They knocked her out with propofol and when I went to the ICU she was on her stomach but out like a light. I talked to her inspite of that because they say sometimes even in an induced coma people can hear you. I held back my tears and told her that everything was going to be okay and that she will come home soon.
I asked the doctor what we could do. He said there was nothing much but to hope that this would work.
A few weeks ago I had googled her primary care physician. My mom was being taken care of by Dr. Shrikanth Srinivasan, head of the intensive care unit at Manipal Dwarka. I had found an article in the Times of India from a year ago that mentioned that Dr. Srinivasan had used ECMO to save people’s lives during the pandemic.
ECMO stands for Extracorporeal membrane oxygenation. In short this means that blood is pumped out of your body into a heart and lung bypass machine. The machine will remove CO2 from your blood and add O2. Then the blood is pumped back into your body. ECMO can function in two modes. It can bypass your heart and lungs or just your lungs.
The next morning I got a call saying that proning had failed. My mom’s blood CO2 had gone up so much that they had to flip her back onto her back lest her organs get damaged. So here we were, back to square one. The ventilator was running at 65% FiO2 that morning when I walked in. They said she’s okay for now but we don’t know how long this will keep her alive.
I asked Dr. Shrikanth if he could use ECMO for my mother. He said that ECMO is usually used in cases that decline rapidly with ventilation. Since my mom had already been on the ventilator for 7 days at that time, the chances of ECMO working were not very high. Furthermore, he said that since her creatinine levels were rising her kidneys were also currently being affected, so ECMO may not help that much.
I insisted that she was healthy in almost every other way and that she had been leading a healthy life up until this crisis. That she was strong and could take care of my brother all by herself. I mentioned to him that I am not a person who tries things frivolously. My father died of lung disease 10 years ago and it was an incurable disease. We did not intubate him in his last days or unnecessarily make him suffer. When it was time to let go, we let him go.
But in my mom’s case she has a fighting chance. If she makes it across this crisis, she could recover. He reluctantly agreed and said “I’ll do it because you are asking for it.”
So on 24th August my mother was placed on VV-ECMO. VV is the version of ECMO that just bypasses your lungs. Since her heart was working fine, they didn’t need to bypass her heart. She improved rapidly once placed on ECMO since now her lungs could rest completely. The ventilator was still hooked up to her but it was almost off.
The day after she was placed on ECMO she was conscious and she was joking around. She asked me how Leila was and even stuck her tongue out to imitate Leila. She couldn’t really talk because of the trach but she was highly interactive.
ECMO carries considerable risks since your blood is being pumped out of your body. Clots are the biggest risk and although they try to manage them, sometimes patients die while on ECMO. Also, blood loss is a significant problem. When on ECMO my mom needed additional blood transfusions. For this, I had to reach out to donors. Friends and family jumped in to donate blood and we had more blood than we needed!
After 6 days on ECMO she was taken off ECMO. The doctor said that they had reached their objective. Now she was back on the ventilator with minimal vent settings. FiO2 around 35%, PEEP was 5cm H2O. They said they would now try to wean her off the ventilator.
But the next days she started declining again. Another infection.
They had to crank up the ventilator once more. They increased the FiO2 to 60% and the pressure had to be increased as well. CT scans showed that her lungs were still completely full of fluid and other debris. She was once more weak and almost unconscious from the fentanyl infusion.
At this point the doctors were really concerned. I asked Dr Shrikanth what could be done and he said “Nothing”. I said can she be placed on ECMO again? He said: Absolutely not.
So now what? It was time to pray. They had tried to wash out her lungs repeatedly with saline to improve oxygenation. It helped somewhat but not really.
On September 6th I got another call. They suspected that her left lung had blown a hole in it. Pneumothorax. They said they needed my consent to insert a chest-tube to drain the air from the cavity around the lungs. Otherwise the air will leak outside the lung and accumulate around the lung. This would lead to the lung collapsing again from the air pressure on the outside. She also had a subcutaneous emphysema wherein air was leaking from her lungs into the surrounding tissue.
By now I was aware of all these things since all the links on Google were purple for me. I had read about several cases where these things happen. I had read that in severe COVID-19 cases pneumothorax was fairly common for intubated patients. Unfortunately pneumothorax is a serious complication and further worsens the prognosis.
During these days she had also had her blood pressure waxing and waning. On one particular night her blood pressure was 60/35. The doctors gave her norepinephrine to keep her alive. I was panicking but there was nothing I could do. I just had to let go. I had got good at letting go by now.
I had got several ‘second’ opinions. All the experts I spoke to said the same thing – they’re doing everything right but things don’t look good.
After this, the ICU kept managing her with the same parameters. They tried to lower her ventilator settings and she would protest. But slowly over the next 5-10 days they managed to bring her down to 35% FiO2. From here onwards her ventilator settings would fluctuate between 35%-45% FiO2 but her pressure requirements had not reduced.
They had been trying to wean her off the ventilator but it wasn’t working. Unfortunately when patients are placed on the ventilator for a few days, their respiratory muscles start to waste away. This means that their ability to breathe spontaneously goes away rapidly. So ventilator weaning is very challenging. The older and sicker the patient is, the harder it becomes. It is also impossible to say whether they will ever successfully wean from the ventilator. Some patients get stuck on a ventilator forever. This was a very real possibility for my mom since her lungs had not really opened up at all.
But I celebrated every little win. She was down at 35% FiO2 from 65%. She was down at 7cm H2O of PEEP vs 10cm H2O.
However, she was not healthy enough to discharge from the ICU. She was stuck in the ICU with nowhere to go. Stuck in a room full of sick people, monitors, 24×7 noise and lights, and a very unhealthy environment for her mental health.
It was at this time that she was also having strong hallucinations and couldn’t really think straight. I was very worried about her mental health. So were her doctors. She also looked depressed and cried a lot. I asked her doctors to move her by the window and this helped a little.
She was on the ventilator, we were not able to get her off it. She was very weak and very sick. Unable to stand or walk or even turn on the bed by herself. We did not know what to do next. Until an option finally revealed itself.
