Intubation, just the beginning

I knew what intubation was.  My sister had been intubated just before her death.  I knew the sound of the ambu bag forcing air across the vocal chords.  I was sure this meant my baby was dying.  I nearly collapsed.  I had to leave the room as the doctor slid a tube down Bekah's throat and connected it to a ventilator so she could breath.

When I saw her again minutes later, she was asleep, doped up on ketamine.  A paramedic transport team was on its way to stabilize her and transport her to Kaiser Sunset's PICU.  I kept telling myself, if they can stabilize her she can live.  My sister had died in preparation for transport.  I knew how difficult it could be to stabilize a patient.

The paramedic team arrived with a gurney that had everything Bekah would need to live for the next event.  There was a glass box used to stabilize her body temperature which had dropped to a frigid 96 degrees.  There was a ventilator and several different monitoring devices.  I couldn't wait to get her in the box and warm.

The team worked for hours to ensure that transport was completely safe for her.  When she was finally loaded into the back of the ambulance, I breathed a sigh of relief.  I rode in the front and could hear that things were going well in the back.  Bekah was stable and tolerating the transport without incident.

We arrived in the isolation room at the PICU surrounded by drs and nurses.  One of them approached me and asked if I had ever heard of CCHS or Ondine's curse.  I signed a convent form to run genetic testing for this horrible disorder and was told that my baby may need a teach for years.  Later, I would research CCHS (Congenital Central Hypoventilation Syndrome) and learn that for some families,  this means their child doesn't breath during sleep.  It would be weeks waiting for the results of the test.