@mackenzies_eb_journey: 12 hours in our life- 5:30 am to 5:30 pm We knew this would be a hard day. Mackenzie had an esophageal dilation that was increasingly complicated due to her Epidermolysis Bullosa and recent soft palate injury. She’s also 21 months old, and hospitals are not fun places for anyone… but especially toddlers. Mackenzie was cranky and tired. She didn’t sleep well the night before and she was HANGRY. She kept asking for her “ba-ba” and was not easily distracted. We talked with her medical team regarding her complications, and they warned us that the dilation that was scheduled for an hour would likely take a little longer due to the careful nature of putting her under anesthesia. THREE hours after our daughter was taken out of our arms, we were finally updated that the dilation went well and we could see her in recovery. They bring us back quickly into the PACU to protect her skin that they had to unwrap during the procedure. Mackenzie was so unhappy after surgery. Miserable doesn’t even cover it. She was so angry about having an IV and kept trying to remove it. She was in obvious pain and required multiple doses of morphine to keep her calm. Her oxygen saturation was borderline low as her body adjusted to the increased morphine, but luckily stabilized and we went up to the GI floor. We expected to stay overnight. That was always the plan because of her age and the complex nature of her EB. Mackenzie calmed down after being fed through her g-tube, and spent a short time playing. But she quickly tired of the hospital room and kept trying to lay on the floor crying. We tried walking in the hallway, where she would try to sit/lay on the floor and whine, and she could not settle in her room. Luckily, her medical status stabilized. The complications we were monitoring for were not happening, and the only medical intervention she required was increased pain medication, which we can manage at home. We discussed the risks vs benefits of continued hospitalization vs returning home, and we all agreed: Mackenzie would do better at home. So 12 hours after starting with this exhausting day, we discharged back home. And we are thanking our lucky stars that we got to sleep safely in our own beds 💗 #epidermolysisbullosa #hospital #medicallycomplex #medicaljourney #diml

Mackenzie’s EB Journey 🦋

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Region: US

Tuesday 11 August 2026 18:31:18 GMT