Home again.

Bekah is home from the hospital again.  This last time was her shortest visit yet.  She was in the pediatric intensive care unit (PICU) two days for observation.  She was admitted for respiratory failure again.  This time was unique.  She is dependent on a ventilator and has had a tracheostomy since October 12, 2013.  She was 6 weeks old when she got her trach.  This time she was supposed to go to the pulmonologist for a follow-up after her last discharge.  She gets non-emergency medical transport for all her medical appointments.  The ambulance came to pick her up and the moment she was wheeled into it, she desated and bradyed turning blue.  Her heart rate dropped to 60. The respiratory therapist took her off the vent and used an ambu bag to breath for her.  She came back up but was still uncomfortable.  The r.t. tried repeatedly to put her back on the vent.  Bekah wasn't having it.  Her oxygen saturation levels kept dropping as she gasped for breath.  She was bagged all the way to the dr.'s office.  I wish you could see the look on the faces of people as we came into the office.  Here's this 4-month-old baby on a gurney being bagged and surrounded by paramedics.  It really looked like we mistook the office for the e.r.  The gurney wouldn't fit in the elevators so the e.m.t.s had to keep unloading it so the back of it would fold down.  Meanwhile, people are staring at us aghast.

We met Dr. S. in the hallway and he escorted us to his biggest exam room.  After a brief conversation, we decided she should go to the emergency room.  Of course!  We piled back into the elevator again. Down stairs, we went code 3 (lights and sirens) across the street to the e.r.

As soon as she was put onto a hospital bed, she was put back on the vent, smiling, blowing raspberries and looking around.  Seems she just detests the car seat.  They kept her for observation anyway.  She did just great during her 2 day stay.

While there, the drs determined that she needs to be sedated for all future transports.  Hello benadryl! They also decided that once home, she isn't to go anywhere for the next two months.  After that she will make all of her follow-up appointments in the PICU.  No going from office to office for follow-ups.  The drs will visit her in the hospital.

She is coin well now, her first night home was uneventful.  She is recovering from a painful muscle biopsy, the fatigue of being in the hospital and now the poor thing is teething.  She just can't seem to catch a break.

I will go into her history in a later post.  I am hoping to share her journey with other parents and caregivers of medically complex kiddos.  I welcome family and friends to keep up to date on her well-being. Please feel free to ask questions, share stories, and offer advice and support.