I brought her home.
All the doctors I had spoken to had said an emphatic “No”. All of them, except her treating physician.
We had long discussions day in and day out about what to do. He said that she would not get better in the ICU. Her mental health had declined a great deal and right now she was in a poor but stable condition. If she were to acquire another secondary infection in the ICU it might be the end.
But how could I take her home while she was hooked up to a ventilator? The doctor recommended a specific home-ICU service that could do the job. He said it was founded and run by another critical care specialist and they had had some success with patients on ventilators.
Everyone I spoke to was dead against the idea. What if something happened at home? What if we needed to rush her back to the hospital? What if the home-ICU service wasn’t good?
I had all these questions as well. It was a life or death decision. And once more, it was mine to make.
I started reading about home-ICU setups and services. Most home-ICU setups are started by critical care nurses. They run the organizations as they are well trained in taking care of patients in the ICU and mostly can continue to take care of them under the occasional supervision of a treating doctor.
However, my mother’s condition could change rapidly. She wasn’t “an old person who is on dialysis”. She is a critically ill patient whose lungs are full of fluid and needs ventilator support. But her illness was acute, not chronic. So this was a really risky move!
There’s a website called Intensive Care at Home which is by Patrik Hutzel. He used to be a critical care nurse and started his own home-ICU service more than a decade ago. He has videos and podcasts and consultation calls, and more to re-assure people who are exploring this option. Honestly it all sounded a little sale-sy to me. I was extremely skeptical since my mother had so far reached a stable condition but she was nowhere near coming home without constant supervision and 24×7 support.
I asked her doctor if it was possible to move her to a room in the hospital. Here is where I had to learn about hospital dynamics and how they staff different sections of the hospital. The doctor explained to me that if I were to move her to a room in the hospital, the nurse taking care of her over there would not be a critical care trained nurse. So they would not be qualified to deal with an emergency right there. A home-ICU critical care trained nurse would fare much better!
I decided to reluctantly talk to the doctor running the home-ICU service. I reached out to him over the phone and told him the details of my mother’s case. He sounded extremely confident that she would recover! In fact, he sounded almost too confident!
I decided that before I would make a decision I had to meet this doctor and grill him with all the questions I had.
I had some more questions that I asked. Things like “What if the ventilator malfunctions at home?”. He said they have a backup, the balloon pouch thing they can use to manually ventilate while my mom is taken to the hospital. I had several other questions like this and he had very good responses to all of them!
So I wanted to ask my mother’s treating doctor some more questions before making a decision and those questions looked like this:
I was satisfied that almost every eventuality was covered. We live 8 minutes away from the hospital so it would be fairly simple to take my mom back. The home ICU setup is fairly expensive but since my mother was not getting better at the hospital, I had to make a call on this.
After discussing it with family and friends, who were mostly against the idea because of fear and uncertainty I decided to go with my gut and trust the doctors who had treated her for the last 45 days and kept her alive. Honestly if she was going to die, I would rather it happened at home with her family around her. I couldn’t find out what she preferred because she wasn’t in any state to talk or make decisions.
I decided to bring her home with a 24×7 critical care nurse, attendant, ventilator support, ECG machine, suction machine, ICU bed, etc. The transfer happened blindingly fast! The home-ICU people put things in motion and my mother’s room was transformed into an ICU within hours. We moved by mom home on Sunday, September 24th 2022.
What happened next was really surprising! It was exactly as Dr Garg had very confidently said. He had said that “50% of the patient’s recovery is just the change of atmosphere from the ICU to the house”. She started improving very quickly. The first few days were agonizing as we were getting used to everything. I had replaced visiting her twice a day at the ICU with having her here 24×7 with ventilator alarms, ECG beeps, suctioning her ventilation pipes, and more. We also suddenly had two unknown people living in the house, heck, in her room, with her!
The team were really dedicated to her. Within days my mother was on no oxygen and just pressure support from the ventilator. This is a real complication of placing a patient on a ventilator. Within days their muscle strength starts to decline and they lose the ability to breathe spontaneously because their breathing muscles have atrophied. So the process to get them off the ventilator can be quite complex.
The team started physiotherapy the day she got home. Her muscles had wasted away from 48 days of lying motionless in the ICU. Now she needed to recover all of that. She was also placed on a diet where she had to eat 6-8 times a day. Her routine started at 6am and ended at around 11pm everyday. They also started some chest massage exercises etc to reopen her lungs. They used a special massaging device for this.
After about 20 days at home she was able to breathe without the ventilator. The process to get to this point was that they would remove the ventilator for an hour, then put it on for an hour. Then once she could manage this, a few days later they would remove it for 2 hours, keep it on for an hour. And so on. This process is called weaning. It makes sure you slowly ramp up to being able to breathe again. My mom was weaned over this 20-day period and after this, she never went back on the ventilator again. The other plus point to this process was that when my mom was off the ventilator, she could actually speak again. Ever since she was tracheostomized, she couldn’t talk because of the hole in her throat. But with the ventilator out, and a special valve, she could talk.
Since she was now stable and able to breathe without the ventilator I felt like we had crossed a huge barrier in quality of life. She didn’t have to live hooked up to a machine anymore! Now she just had to regain her muscle strength.
At this point I decided to take a trip to Lisbon to get a taste of normal life once more. I had been in India for almost three months, I traveled here with 5 t-shirts in my bag, not knowing what I was going to face. In the meantime, I had almost lost my mom, gone through a breakup with my girlfriend, and had spent the whole summer in the ICU. I needed a break. So I went back to Lisbon for a few weeks.
My mom was stable and breathing without the ventilator and the critical care nurse and attendant were still sleeping in her room. Her physiotherapist came in every day to make her workout. When she came home from the hospital my mother couldn’t even lift her arms. She had no strength. By the end of one month she could sit at the edge of her bed and walk with some assistance. The doctor was anxious to remove her tracheostomy so I came back to Delhi after a few weeks as my mom wanted me to be there for the procedure.
Dr. Garg came home and took it out within 2 minutes! It was very simple and she was finally free from the ventilator for good! I stayed in Delhi for another few days and told my mom I need to go back to Lisbon now. I have spent 3 months of my life here making sure you are alive and I think we are headed in a good direction now. I need to take care of myself now and heal from this experience as well.
Over the next few weeks my mom kept gaining her strength. Eventually we didn’t need critical care for her and after a few more weeks even her attendant was not required anymore. My mom is on the road to certain recovery with a good quality of life! She can live independently with no assistance and is continuing physiotherapy to build back all her muscle strength and recondition her body.
I cannot express how grateful I am to all the doctors, nurses, researchers who invented all these modern medical contraptions, companies that invented all these drugs and antibiotics, and life in general for giving us a second chance at everything. After my father died 10 years ago, I had lost faith in the medical field. He died of an incurable autoimmune disease. So in his case, there was really no hope of survival. However, in my mom’s case – against all odds – she survived! It’s true that she received the best possible care she could have, but it was quite clear that without that standard of care, she would not have made it. It really was touch and go so often and for so long that I have had my fill of anxiety for the next decade. I crave peace, calm, quiet, and comfort after this humongous ordeal.
I came back to Delhi in March 2023 once more and my mom and I took a family trip to the Maldives with one of my closest friends. I could not believe that we have come this far. She was able to fly with us, walk around everywhere, take boat trips to the middle of the Indian ocean, and more!
It was through this experience of my mom being sick that I realized once more how precious life is, and how seldom we get second chances. Everything we have can be gone in the blink of an eye. It’s so important for us to be grateful for the people that make our lives special and our moments joyous.
The past months have been an incredible journey and life has given us a new opportunity to make the most of it. And we sure will!
