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Mom shares emotional account of watching her hospitalized toddler struggle with RSV

Michelle Walden talks candidly about her 3-year-old son, Elias (El-ias), and his hospitalization with RSV (Respiratory Syncytial Virus). Elias had spent 287 days in the Beacon Children’s Hospital NICU in 2018.

Last Friday started like any other day. My son, Elias, went to school and had a normal day. He and I ran a few errands together and he was ready for a nap when we returned home. I went to get Elias changed and realized he was burning up. So I gave him some Tylenol thinking that would help. But over the course of the night, Elias’s fever persisted. This is unusual for him. He has never had a fever I couldn’t break. At its highest that evening, his fever was 102.5. I was up all night checking his fever and adjusting his oxygen levels to keep him at safe levels.

By morning, Elias still had a fever, and he was needing more oxygen than our home set-up allowed for. I decided to take him myself to the ER to be checked. In my head, I thought he had an infection or even COVID. Once we got at Memorial Hospital, they ran tests and cultures to find the culprit. While we awaited the results, Elias was admitted. His heart rate was high, his fever was high, and he just needed more support.

What makes Elias’s admission to the hospital different than another toddler? Elias is medically fragile. He was born early at 1-pound, 11-ounces and has a tracheostomy to breathe. He needs a feeding tube to eat. Illness can be devastating for us. His dad, Chris, and I felt helpless as we watched our miracle baby struggle once again to breathe. We spent the first year of his life behind hospital walls and going back is not something we want to do.

But here we are.

People say don’t think the worst, but with a child that’s fragile your mind reverts to a place that trumps most rational thought. I am in a fight or flight mode. And for my son, I fight. I fight for his health and his right to live a comfortable life. To have QUALITY OF LIFE. Being in the hospital is not a quality way to live.

Once we were settled in the hospital, we found out the name of the thing that’s knocked our sweet boy off his feet. It is RSV. Even though RSV is not COVID, it can be just as dangerous, especially for our littlest of humans. Add in the ones who are compromised in some way, and RSV can be deadly. For my son, it can be deadly or have long lasting affect to his progress.

Not many people understand RSV. They think it is a small cold, or allergies. In the healthy adult, RSV may very well look innocent enough. And even in most healthy kids RSV can look like just a runny nose or minor cold. That is not the case for all children. RSV for Elias is needing oxygen support, its needing IV fluids, medications and breathing treatments around the clock. RSV is my baby using all his energy just to breathe. It is having coughing fits. It is being held down for procedures and pokes. It being back on breathing support we worked for three years to get off of. For a mom, watching your child struggle is heart wrenching. I retreat to the bathroom to cry so I don’t upset him more. There is nothing I can do, except hold him and pray he is strong enough to make it though.

I am writing this to appeal to everyone to think of others before going out sick, sending your kids to school with runny noses or slight illness. I beg of you to think of the people who cannot fight the same as you can. Think of the babies struggling to breathe and the moms and dads who haven’t slept in days because they stay beside with their sick children. Stay home if you or your family members have respiratory illness symptoms, be it COVID-19 or RSV. Remember to wash hands and teach your littles the same. Teach them to cover their mouths when they sneeze and cough, or better yet, teach them how to wear a mask. Wear the mask for babies and children fighting for their lives. Wear it for the elderly who may be too weak to fight. Just wear the mask.

It is not about being forced to do anything. It’s about thinking of others who cannot fight for themselves. It is rallying behind parents who fight everyday to keep their child on this Earth and letting them know that they are supported and not forgotten. Anything less is selfish and self-serving. Try and think of other people. And if you cannot do that, at least think of Elias, and try to make better choices. Those choices may lead to him being able to go home to his doggy, Papa and Daddy, back to school to his friends, and out of the hospital.

*At the time of publication, the Waldens had just received the news that they would soon be discharged home with Elias from Memorial Hospital.

 

 

About Heidi Prescott

Passionate about writing her whole life, Heidi Prescott joined Beacon Health System in 2015 and currently serves as Director of Communications. A former newspaper journalist who has experience in TV, radio, magazines and social media, Heidi loves storytelling, photography and spending time in nature.