Posted on January 4th, 2019
My son was diagnosed in 2015 with a brain tumor at the age of 18. After 2 brain surgeries he was tumor free, but the tumor had permanently damaged his pituitary and hypothalamus glands, as well as the optic nerves leaving him almost blind. With no functioning pituitary gland he is a hormone mess. One of the many conditions he has is being adrenal insufficient, therefore he is immune compromised. (Sepsis and Impaired Immune System)
In November 2016, it was a Saturday evening, I had noticed Zachary sounded congested and had started coughing. I took his temperature and it was normal. I kept asking him if he felt okay and he kept saying yes. My gut keep telling me to take him to the ED because he is medically fragile, but he keep insisting he was fine and he did look okay. I told him if it wasn’t better in the morning we were going to the ER. He agreed with that. We all went to sleep that night. At around 4 am I woke up to use the restroom. I heard an odd sound, which took me a moment to recognize it was Zachary’s breathing. His breathing was loud and rattled. I bolted into Zach’s bedroom and found him cold, pale, lips and nail beds blue and extremely difficult to rouse. When I could get him to speak, it didn’t make sense. He also had thick, purulent mucus pouring out from nose, eyes and mouth.
I yelled at my husband to call 911. EMS arrived quickly, all I remember them saying were the word “imminent” and that his oxygen saturation was 47%. He was taken to our local hospital. They immediately recognized he was in septic shock. My son had bilateral pneumonia. (Sepsis and Pneumonia) IV meds were immediately initiated and he was intubated. Since we live in a rural area, the decision was made to fly him to a larger hospital for a higher level of care. He was flown to a hospital 3 hours from our home. He spent the next 15 days on a ventilator in medical ICU. Because of his hormone problems and fragile health, everything about his care was more complicated.
He developed diffuse pulmonary embolisms in both lungs. It was very scary and we didn’t know if he would pull through. But, he had a marvelous team at the hospital that worked diligently and tirelessly to save him. After 3 weeks in the hospital, he got to go home, but he spent the next 8 months on home care doing occupational and physical therapy. His lungs are permanently damaged and he is now on continuous oxygen. Between the damage the brain tumor did and the sepsis he is now permanently disabled. I am so thankful he is still with us. It scares me to think about what if I hadn’t awoken that early morning to hear his breathing and I also beat myself up for not listening to my gut that night and taking him to the ED that evening. I am still terrified thinking about how quick he went from what I thought was a slight cough and congestion to almost losing my child.