31 Days Of CF: Our Son’s Journey Through Diagnosis and Treatment

Bautista Torres (Photo courtesy of Jessica Torres)

Day 28 of 31

This is Jessica Torres (@jessi.v.torres) and Bautista’s story:

Cystic fibrosis entered our lives without permission, turning everything upside down. After a more than weeklong hospitalization with oxygen for acute bronchitis, Bautista (then almost 3 years old) continued with coughing to the point of not being able or wanting to do anything but lie down.

We consulted a pulmonologist who recommended lots of medical analyses in a very short period. Possible diagnosis: CYSTIC FIBROSIS. During that week, we were still hopeful that our little boy would be healthy.

On Oct. 7, 2021, when I went into the office with all the results, the doctor looked at everything and told me she had no doubts. She told me that CF is not what it used to be, that my son would be fine. She explained many things that I can hardly remember, I can just see myself sitting there hugging my baby while our world was falling apart. We were expected the following Tuesday to meet with the CF team. I gathered my things and walked out hugging my son as he cried. Bauty’s dad was at work waiting for good news. I got in the car and, with deep sorrow, told him the bad news.

That Tuesday, the team explained everything better and told us that we had to be hospitalized for 15 days. At the clinic we started to live what cystic fibrosis is. Central line, blood tests, X-rays, elastase, enzymes, vitamins, nebulization, kinesiology, doctors asking questions, bureaucracy with our Social Security, a disability certificate. It was a very difficult 15 days, in which many times we asked ourselves: Why him? What did we do wrong? Why does he have to suffer so much?

Even today we are still processing what we experienced and adjusting to our new life. The strength and courage that our son has is incredible. Every day (without fail) he puts his body through medical treatments without losing his beautiful smile. We accompany him from our place so that he never lacks or misses anything, and feels loved and like the child he is.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or read the full series.