Figure 4. Hospitalizations and surgeries during a 1-year prospective study of myotubular myopathy.

We tracked hospital visits (ER and admissions) and surgeries during our 1-year prospective analysis. Twenty-four of 33 individuals in the study required at least 1 of these services (pie chart, top left). There were 38 ER visits (pie chart, top right, listed by chief complaint), with fever and infection the most common reasons. Infections included pneumonia, pseudomonas, enterovirus, and rhinovirus. ^aRespiratory issues included respiratory distress, lung collapse, and high CO₂ levels. ^bEquipment issues included ventilator malfunction, mucous plugs, and leaky gastrostomy tubes. ^cOther reasons for ER visits included drug allergy, power chair accident, postsurgical hip pain, and inability to urinate. There were 13 emergent hospitalizations (i.e., not scheduled or elective admissions), with infection the overwhelmingly most common reason for admission (pie chart, bottom right). There were 27 elective surgical procedures reported, with ear tube placement (i.e., myringotomy tube placement) the most common surgery. ER = emergency room.