Trach(e) is in.

Sarah had a tracheostomy placed late on Friday.  When the surgeon came out, much later than expected, she was smiling.  Smiling surgeons post-op are always good.  "Sarah is a complicated kid."  That is not exactly what I wanted to hear, but so long as the surgery went well...

 

There were three procedures: Pulmonary broncoscopy to look at her lungs, ENT broncoscopy to look at her airway, and the tracheostomy.  Both broncs were uncomplicated.  They just sent a tiny camera down her tube, which was already in place, and looked around a bit.  ENT did not show anything which would cause the problems she has been having.  Pulmonology showed that the airway into her left lung looks as though it is being pressed.  I have been trying without success to think of a good visual.  The bottom line is that this could cause all kinds of problems.  It could make it so that secretions that get it cannot get out easily.  (Thus repeat pneumonias in the same place?)  It could mean that less air is getting in.  It could certainly explain what we have been seeing in recent months, when she goes from looking relatively well to ER emergency very quickly.  They have ordered a chest MRI, when she is stable, to see what exactly is going on.  

The pulmonary bronc showed that placing the trache was going to be difficult.  Most people have rings of cartilage around the trachea.  The surgeon knows where to place the trache by counting an appropriate number of rings.  Sarah has no rings.  The cartilage that protects her trachea is what they call a "sleeve."  A sleeve, rather than rings,  means that figuring out where to place the trache was more difficult.  Her placement was also complicated because, "her anatomy just is not straight."  But they got it in, after measuring and remeasuring, and they are confident it is in the right place.  

Standard care after a trach is between five and seven days of no movement.  Those first few days are very important in the healing.  You do not want it bumping around at all, because when it is well healed, you want a nice round, smooth site- irritation can cause granuloma (an infection at the site) or otherwise slow the healing.  Since this is the airway, keeping it infection-free is critical.  After those first few days, ENT will do the first trache change.

Until the first trache change, Sarah does not just have to be sedated, she has to be mostly paralyzed.  She is on frighteningly high drips of sedation and pain medications, and she is on a paralytic drug.  This is one of those cases where the necessary thing causes predictable problems.  Medicine medicating medicine.  Because of these drugs, she cannot cough.  Her bowels are slowed significantly.  While we want her to be blissfully unaware for the next few days, we have to be careful not to over-sedate.  Her blood pressure had been low, bordering too low, because of the sedation.  Her heartrate had been high, uncomfortably, indicating pain or anxiety.  (Imagine how you would feel if you could not move!  You can not even cough!)  Both are under control now, and Sarah looks comfortable.  Tomorrow is day five.

Tomorrow it is possible that Sarah will have her first trache change.  That would mean we can begin to pull back on sedation- starting with that nasty paralytic drug.  Which in turn would likely mean progress on feeding- Sarah has been getting food, but only about half her normal .  It could mean progress for her lungs- no matter how much suctioning they do, a strong cough is more effective.  It would certainly mean that when things make her mad or upset, she would let us know.  (Currently, our only clue is the heart rate, which is affected by all kinds of other things- including some of the medicines she is on.)

But she has to be safe.  They will not change the trache if taking her off oxygen briefly is likely to cause collapse.  Sarah's lungs looked worse after the surgery than they did that morning.  And each day, until today, they were looking a little worse.  He left lung was collapsing.  Today the x-ray looks better, but she is requiring more support from the vent.  I am telling myself (and anyone else who will listen) that I think today marks real progress.  I think that she is moving mucus around and out (better x-rays) which has caused some plugs.  I think a few good coughs would do her a world of good.  But, again, no one is going to change the trache if they are not confident it can be done safely.  

There has been a lot on my mind these past few days.  Sorry for such a delayed update.  Each day that I have thought I would update, something more pressing prevented me.  It has been an eventful few days.  

Tonight, I will sleep peacefully looking at a baby who is looks beautiful and all indications are that she is comfortably sleeping peacefully herself.