Making Every Second Count While Waiting for a Miracle

During the six weeks that my daughter Bella, 13, was hospitalized at Children’s Hospital Colorado for a neuromyelitis optica (NMO) attack in 2017, my husband and I kept vigil at her bedside. Too worried to sleep, we prayed for a miracle every night.

As soon as we received Bella’s diagnosis, I made it my mission to learn everything I could about NMO. I wanted to advocate for all NMO patients and caregivers, so that nobody feels alone in the fight.

To help those in our community facing hospitalization, I want to share how I utilized my time at the hospital and coped with the stress.

Firstly, I requested we have as many medical professionals and researchers involved in Bella’s case as possible. I was convinced that the more minds at work, the better the results. I asked everyone questions so that I understood everything that was being done and the reasons behind it.

Every day, I woke up early and got ready for Bella’s team of doctors and nurses to come in and do morning rounds. I initially had trouble understanding all of the medical terms, so I recorded the rounds and listened to them again later, looking up any words I didn’t understand. I can proudly say that four years later, I have a much better understanding of medical terminology, which has been extremely useful in caring for Bella.

Recommended Reading

December 7, 2021 Columns by Lelainia Lloyd

The Importance of Health Literacy

I always appreciated when Bella’s nurses would stay after rounds to answer my questions. I am profoundly grateful to them for putting up with me and keeping me company, especially during the most challenging nights of our lives. Bella’s nurses comforted her, made her smile, and calmed her nerves. They watched over her so my husband and I could get a few minutes of rest. While Bella was in the ICU, I would often sit with her night nurse, and we’d watch her every breath.

One night, while Bella was intubated, I noticed she would take two breaths, stop breathing for 15 seconds, take another two breaths, stop breathing for 15 seconds, and so on. I later learned that this is caused by a lesion in her brain that affects her ability to breathe and swallow. The lesion is also responsible for Bella’s retching and hiccups.

To this day, when Bella falls into a deep sleep, she will repeatedly take two breaths, then stop breathing for exactly 15 seconds. This residual symptom of Bella’s NMO is the most terrifying one of all. At times, I worry Bella won’t start breathing again.

The bad thoughts are what make the time in the hospital really tough and scary. When I was alone and not doing research, I’d go for a walk. Even if it was just downstairs or right outside the hospital, I had to make time to clear my head of negative, scary thoughts so that I could make the best decisions for my Bella. Walking away for a moment allowed me to absorb everything I was learning and process everything going on with her.

Despite the similarities, everyone’s experience with NMO is unique. That’s why it’s important for me to tell Bella’s story. The more we know about this rare disease, the better the chances of finding a cure one day.

As we face difficult situations and wait for a miracle, let’s continue learning about NMO and advocating for our community.

***

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).