PICU, part 3

Noah is back in the PICU.

He had a really rough morning that ended with a slight obstruction in his airway and high carbon dioxide levels.  They have put him back on a ventilator and he is breathing much more comfortably now.  His numbers are back to normal but the trauma of the morning has resulted in a lot of fluid build up in his lungs.  He is receiving treatment for this fluid every 4 hours and we are hopeful that much of it will be cleared up by tomorrow.

We have a lot of questions and very few answers.  

One line of thinking is that Noah's digestive issues are continuing to plague him.  We started feeding him via g-tube on Friday night.  We found a middle ground with the doctors regarding his feeding regimen... not nearly the increase in volume that they were wanting but still a fairly ambitious plan that tested his stomach capacity.  This was potentially our undoing.  In hindsight, it seems that Noah started getting fussier yesterday after we hit the 3 ounce mark in our feedings... and then we used a continuous drip over night.  All of that formula may have encouraged some reflux to sneak up past the fundoplication and add to the secretions that have been his nemeses from the beginning.  These secretions make breathing more difficult for Noah and reduce his ability to vent carbon dioxide effectively.

A second line of thinking is that Noah's leukodystrophy is causing him to lose control of the muscles that help him keep his airway open.  This is a much more discouraging possibility.  It is not uncommon for kids with neuro-muscular disorders to struggle with breathing and many end up with tracheostomies to control their airways.  Please pray fervently against this.  We obviously do whatever is necessary for Noah but do not feel ready to take this step anytime soon.  

We are exhausted but relieved but so thankful that Noah is breathing easier.  He is likely to be in the ICU for the next few days and I am making no predictions about when we might be going home.  

“You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be.” 

Stockdale Paradox as quoted in "Good to Great"