We returned to PICU around 3:30pm Thursday 10th January. We approached the ward and seen Ezra being wheeled back to his station. A tiny dot on a massive hospital bed with tubes everywhere. We followed him through and waited for the results of the CT scan. Not long after we were yet again in that family room with the same consultant and the team of nurses and doctors who had been caring for Ezra, all with tears in their eyes. “The results of the CT scan, shows devastating damage”. When they turn off the machines Ezra’s body will not be strong enough to live, his brain will not work.
They asked if we wanted to hold Ezra before switching machines off. We didn’t, we couldn’t (something I will regret for the rest of my life!). They also asked if we’d like to wash him and dress him, the answer was still no. I handed Ezra’s navy and white stripped sleep suit to the nurse who went off to dress my baby because I wasn’t strong enough to. The consultant explained he’d like to take some more blood from Ezra and urine and also do a lumbar puncture test. A lumbar puncture is what is done to diagnose meningitis and to know what form of meningitis it is. From what I understand they couldn’t do this at the start because of Ezra being so small it could have made him worse and they were treating him for meningitis anyway.
Around 5pm we decided they had poked and prodded our son enough, he’s done with fighting, he’s gone and not coming back. We went to see him and to give them our permission to turn the machines off. Ben held is hand, I sat in the corner and wept. At 5:37pm that evening Ezra’s heart stopped beating. We left Bristol’s Children’s Hospital at around 6:15pm that evening with a bunch of paperwork, a box with hand & foot prints and a lock of Ezra’s red hair. This still doesn’t feel real writing this now.
The following day I had a phone call from one of the doctors who told me the results of Ezra’s tests. The lumbar and blood tests combined revealed Ezra had contracted bacterial meningitis, E.Coli to be precise. Although very, very rare, it is more common in newborn babies along with Group Step B and Herpes virus. I asked numerous times how when and why but no one can answer this. The consultants can’t tell us how he caught this as 70% of new born babies contract E.coli in the first week of life as you can’t protect them from all bacteria (people’s hands, air born germs, bottle teats etc.). Normally E.coli that lives in the gut is fine but what happened to Ezra is that somehow the E.coli in his gut got into his blood stream and no one knows how or why. I’m still trying to find answers now but sadly I don’t think I’ll ever know.
Bottom line, trust your gut if you ever think anything is wrong - extra sleepy, won’t settle well, off feeds, unusually sick. Most importantly ACT FAST!
E Z R A J A X J O H N S O N ~ you are and always will be a massive part of our family, miss you more than words can say.