Hello fellow pedi nurses,
I have a question for you...
My assignment in the past week has included a child (18months) with Epidermilysis Bullosa (EB). The parents have expressed their concern that she may need a trach in the future and I was wondering if any of you have encountered this? I used to do trached patients in home health and my trick to keeping them healthy during the winter was chest PT. Obviously you cant do that (or can you?) with a child who will blister so easily, but on the other hand, you cant suction her frequently (or as frequently) as you would a "normal" (read: non-EB) trached kiddo. Would a vest help? or complicate things even more?
Obviously her airway is/will be a priority and you gotta do what you gotta do...but...Have any of you encountered this? How did you handle it? She has a fine motor delay due to her condition but is otherwise developmentally appropriate.
Thanks in advance for any insight!