Down the rabbit hole

There is such a thing as ICU psychosis.  Patients lose touch with reality due to the 24 hours of activity, lights, alarms and stress.  It also takes its toll on parents of patients in the pediatric intensive care unit.  During Bekah's 3 week long intubation, there were times I wasn't sure she was alive, times when a  near dream state threatened my sanity and times when I was sure I was dying too.  She was in complete respiratory failure. She had several blood draws a day to ensure the vent was set adequately.  She had breathing treatments and every time a nurse went to change her diaper or suction her secretions, her heart rate would plummet and her oxygen saturation level would drop.  She turned blue frequently and needed resuscitation.  Alarms were a constant as more and more tests were scheduled daily.

She had a tube that went up her nose, down her throat and into her stomach.  This is how she got fed. I pumped breastmilk and it was given to her.  Feeding was sporadic because she needed tests that required anesthesia which meant her stomach had to be empty.  My constant question was, when can we restart her feeds?

She was asleep most of the time on a fentanyl drip.  I learned that this drug can be hundreds of times stronger than street heroine.  When she would awaken, she was given ativan to lull her back to sleep. I missed holding her.  I stroked her head to soothe her when she would awaken before the ativan took effect.

The first extubation attempt took place a little over a week after our arrival in the PICU.  Her fentanyl drip was turned off an hour before the trial so she would be awake.  When the tube was out and she was off the vent, I was finally able to hold her.  She was just on oxygen, but she sounded like she was breathing through a crushed rusty pipe.  Her breath was ragged.  She would go 24 hours before she began to show signs of distress.

The next day she was reintubated and put back on the vent.  She had daily chest X-rays that showed her right lung looked small.  Her genetic test came back during week 2.  She does not have CCHS.  Finally some good news.  But that still left her diagnosis dangling beyond reach.

One day, dr so-and-so approached me with a theory that there might be something wrong with her diaphragm.  We would have to wait out the weekend for the fluoroscopy.  This is a live X-ray, like a video instead of a snap shot.  Not long after the study, there was finally some news.

Her diaphragm was paralyzed on the right side.  This meant that when she breathed, the left side would contract normally, but the right side would push up into her lung causing it to collapse.  There's a surgery for this.  It's called plication, where they draw the diaphragm together on that side like you would draw a curtain and tie it back.

I was finally relieved.  It seemed a cure was in sight