Hello! I have been reading the postings here for a few months now and I decided that I really want to be a part of this supportive, encouraging group. Our son, Jonathan, was trached in August of this year. He is on the vent almost all day and is on for sure all night. We hope to have him off during the day at some point in the near future. Jonathan has not been able to attend school yet this year due to complications after surgery that we think are possibly related to his shunt. We have learned the trach cares pretty well and are pretty comfortable with everything. The problem we are having is with our day nurse. She is a take-charge kind of person and wants to be the one in charge around here. She seemed to be very experienced when we first met her (and that's why we chose her) but when she was quizzed on emergency trach safety last week by our RT from our DME company she failed miserably and she got very defensive. She's been doing some things that have really bugged me and I have addressed those issues with her and she just stares at me as if to intimidate me. She is a very nice person and Jonathan seems to like her, but I really need to be confident in her skills. I really need help with Jonathan so I can get away during the day for a break, so I am hesitant to just let her go. Eventually he will go to school and I really need to make sure she's competent. I had a talk with her a couple of days ago about some of the issues and probably need to have another talk again. I just don't like to confront and would rather avoid it. Maybe it's obvious what I need to do, but I'm looking for advice from those of you who have been there.
Amy ~ Mom to Jonathan (2/11/97) spina bifida, shunted hydrocephalus, multiple shunt revisions, Chiari II malformation, G-tube, central and obstructive apnea, tracheotomy 8/10/09, ventilator at night and CPAP during the day, as needed. Also mom to Jonathan's twin sister, Elizabeth, and his older sister, Anne (19)