@mackenzies_eb_journey: One hour. The first few pictures were taken at 3:47 pm. My husband called the paramedics at 4:45 pm. In one hour our child went from happy and peaceful to choking on a toy with her mouth and lips blistering so fast we were worried about her airway. In one hour we went from quietly planning what time we’d make dinner and bathe our children to calling our neighbor to come grab the big girls so they wouldn’t have to watch me force our baby’s mouth open to lance blisters that could compromise her breathing. And just like that… she was stable again. EMS left, and I went back to making dinner. We threw out her blood stained pjs, and all that’s left of this episode is some brutal battle wounds by her mouth, a few pictures, and a pain in our hearts. Nothing can prepare you for the pain of holding your child down to perform medical care that you weren’t trained for to make sure she can get eat and breathe properly again. This is life with EB. And for those of you wondering why we didn’t clean her up immediately afterward, we tried. We tried cleaning as much blood from her mouth and face that she’d allow us to and then we gave her a break because cleaning her up was so traumatic for her. We took our time so that she could calm her body down too. Also she drooled blood for quite a while, so that kept coming out after she had stabilized. #trauma #sickbaby #grief #diml #medicallycomplex

Mackenzie’s EB Journey 🦋

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Monday 13 April 2026 02:44:32 GMT