Back on track

  I apologize for the lag in posts this week but each day the progress was small so I thought it better to put it all in one update.  Monday the procedure went well.  They were able to close the sternum and remove the thoracic line without any issues.  All medicines and tubes remained in tact. She was on two heart medicines, one blood pressure medicine, pain, sedation and her HALIV (which is all the nutrients she needs since she is not on breast milk).  On Tuesday the doctors started weening her medicine and ventilator setting.  She managed to handle everything well and the surgeon told us she was doing great considering the trauma she went through.  She is one resilient little girl!  On Wednesday to my surprise they removed the dressing on her scar.  I promise it looks worse in the picture than in real life.  I also asked about the next three surgeries and if the scar would worsen.  As the surgeries progress, the surgeons will remove scar tissue and clean up the scar.

Lucy with the chest tube:

Lucy with the lung drain tube:

They also removed the chest drain tube.  On the x-ray,s some fluid was showing around her right lung.  They increased her lasix (medicine to help her pee) to see if that would help with the extra fluid.  It did not, so when they removed the chest tube they placed another tube on her right side to drain the fluid around her lung.  The doctors wanted the fluid gone before the breathing tube was removed.  When the fluid around the lung drained there was a milky white substance, called chyle, that drained as well.   We were told this happens when a thoracic duct is nicked, it's called Chylothorax.  Chyle originates in the gut and is carried into the gastrointestinal tract then travels to the thoracic duct before entering the vascular system through the nick in the duct.  To fix this Lucy has to go on a special formula for four to six weeks.  The nurse told us the formula is not really easy to get kids to eat through a bottle, so I guess we're lucky that Lucy has the NG tube for now.  The formula smelled awful (like rotten broccoli) but I figured if she has to eat it, I could taste it as well.  Luckily it did not taste as bad as it smelled, more or less like chalk water.  And no, I have not tasted my own milk....

  Friday was probably the best day in the last week.  In the morning, the surgeon came in and said the fluid around the lung has stopped draining so they would be removing the drain tube and the catheter.  Then later that afternoon her breathing tube would be removed.  Friday night I was able to hold her again with all the tubes being removed.  Hooray!  When I got to the hospital, Lucy was a little agitated from her assessment, but the minute the nurse put her in my arms she stopped.  It was the neatest thing!  She was awake for another twenty minutes before passing out.  We're back to just oxygen and can see her cute little mouth again.

We don't have a time frame on when she will go back to the NICU.  The cardiologists are being a little more cautious to make sure all her vitals are good and breathing on her own is not causing more stress than needed.  As always, through the trauma, we want to look for the silver lining.  What we learned from one of Lucy's nurses is that during the episode last Thursday her lungs and heart worked exactly as they were supposed to function.  It was the extra blood that didn't allow her heart to beat.  So we are grateful that the episode wasn't a result of her heart and surgery.