The Scariest Word in the PICU

To me, the scariest word in the PICU is tracheotomy or tracheostomy.  

It's no longer the word I overhear when passing another room.  It's no longer the word I almost curse at ENT for casually dropping in the middle of a conversation about Lydia.  It's no longer the word I can fear.  It's soon to be our reality.  

Lydia was scheduled to come home Sunday, but as of Saturday she started to show more signs of stress according to numbers on monitors and tests, but not to look at her.  Over the past few days she is showing outward signs of stress.  She's not the happy, wiggly, almost smiling girl from last week.  She's exhausted and fussy and needs help.

Her breathing is still very labored due to the malacia which elevates her heart rate.  Lydia is essentially working like she is running on a treadmill all the time, no breaks, no rests, no off switch.  She's been doing this for close to 5 weeks.  She can't step off the treadmill.  

What really convinced me that she needed help was her blood gases.  Blood gas measures the pH, CO2 and O2 in the blood and tells you if she is able to handle the gas exchange herself.  Lydia's pH is good, but her CO2 levels are high, which leads to high bicarbonate levels.  Your kidney holds on to bicarbonate to fight the CO2, or even out the pH.  Lydia's bicarbonate is high.

The solution?  Tracheostomy.

Currently Lydia is mildly sedated, more like she's on a good muscle relaxer, so that she can wear a clear breathing mask over her entire face.  Without the relaxation she is crying and cranky and won't sleep.  We all joke in the PICU that she can be any hero she wants when wearing the mask.  A scuba diver, a fire fighter, an astronaut.  This mask is pushing air into her lungs and breathing with her to provide help with the gas exchange.  She's also hooked up to some sort of CO2 monitor that the name of escapes me because I can't stand her pulmonologist and I forgot to write down what she called it.  Anyway, it proved that her CO2 was on the rise for a 12 hours period and now it's lowering with the mask.  It's giving us some time to schedule the tracheotomy.    

Today her heart surgeon is doing a CT with contrast to make absolutely sure it's not her heart causing respiratory problems before we trach her.  If it saves her from a trach :)  If it means a problem with her heart :(

The up side?  The silver lining?  With a trach, Lydia will be able to breath easier, lower her heart rate, pack on the pounds and try to feed orally sooner rather than later.  With a trach, Lydia may or may not need a ventilator.  Trach alone may help her breathe enough to grow out of the airway problems.  If by chance she needs a ventilator, it too is something that may not be needed 24/7 and she will wean off of as she grows.  It's all very scary to me, but I'm plastering my brave face on as much as I can and reminding myself that it's all temporary while she grows.

As we are learning about this it is a bit mind blowing.  I'll keep updating as we know more.

According to Johns Hopkins Medicine:

A tracheotomy or a tracheostomy is an opening surgically created through the neck into the trachea(windpipe) to allow direct access to the breathing tube and is commonly done in an operating room under general anesthesia. A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs.  Breathing is done through the tracheostomy tube rather than through the nose and mouth. The term “tracheotomy” refers to the incision into the trachea (windpipe) that forms a temporary or permanent opening, which is called a “tracheostomy,” however; the terms are sometimes used interchangeably.