Two worlds

When we finally left the hospital, it felt as though we had been thrust into another reality.

Starting from scratch

The cardiologist told us that Naomi's heart was stabilising and that, within a few weeks, she could leave the hospital. With the ICD implanted, there was no longer a medical reason for her to stay.

Naomi still had brain damage, but there was nothing the doctors could do to reverse it. The damage was permanent. The prevailing view was that she would show little improvement. Being confronted with that conclusion was deeply painful. Still, we were determined to do everything we could to help Naomi recover, and that journey would now have to continue at home.

The problem was that we didn’t have a home, at least not in Singapore. We had left Shanghai with just two suitcases, and all this time we had been sleeping in hospitals and various hotels. We were in Singapore on a tourist visa. Because my work and company were still in Shanghai, I had no employment in Singapore and therefore no employment pass. Without one, we couldn’t rent a suitable or affordable place to live. We were limited to serviced apartments or hotel rooms. Nor could we enrol Sienna in school.

Everything we had built and taken for granted in Shanghai, now had to be recreated from scratch in Singapore, which was about to become our new home.

The first step we took was to rent a small but expensive serviced apartment and prepare for the day we would leave the hospital. When that day came, we felt both relieved and afraid. We had spent the past four months in hospitals, surrounded by doctors and nurses. Now the time had come for us to take care of Naomi ourselves.

On our own now

Our new reality only truly sank in on the first day at home. Paulina and I stood side by side in our tiny living room, with me holding three-year-old Sienna in my arms. We looked at Naomi, who lay motionless on the bed.

Because of the damage to her brain, she was no longer able to sit, stand, walk, or control her body in any way. Her arms were contracted; her legs painfully stiff, like rigid sticks. She could see and hear us, but she could no longer communicate.

It felt as though we were living in some kind of nightmare, an alternate reality. But this was real.

This was our new life.

Naomi needed our care twenty-four hours a day. We rarely slept, and the full weight of our new reality hit us. It was relentlessly demanding, both physically and mentally. How were we going to do this?

We had to prepare and administer Naomi’s medication at regular intervals throughout the day and night. Every three hours we fed her through a nasogastric tube, constantly worried she might vomit. She would vomit up to three times a day, and each time we had to protect her from choking.

Many times, she would vomit within half an hour of taking her medication, and we had no way of knowing how much had been absorbed and how much had come back up. We had to decide whether to give the full dose again, just part of it, or not at all. Giving too little could increase the chance of seizures or cardiac arrests; giving too much could be just as dangerous. It was an ongoing source of anxiety.

We also had to act quickly when she bit her lower lip, which she did frequently, often until it bled. She would bite, hurt herself, and then clamp down even harder in response to the pain. Each episode was a struggle to make her release her jaw.

It was deeply distressing, especially because she had already bitten off a chunk of her lip in the hospital, and we had to prevent further injury.

On top of all that, we had to care for her surgical wounds, keep her clean and do certain exercises with her. We had to be with her constantly.

Besides caring for Naomi and coming to terms with everything that had happened over the past few months, we also needed to care for Sienna, who had endured a tough time herself. She often asked when her big sister would be able to talk and play with her again.

Despite Naomi’s condition, Sienna still drew close and enjoyed her sister’s company.

We missed the Naomi from just a few months ago.

I especially missed her voice, her stories, her many questions and her singing.

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