Day 12

During Friday morning rounds, Dr. Hoffman decided that a feeding tube was necessary.  Her nutrition was becoming very concerning, as the little she was eating she was also throwing up.  They also requested a visit from a nephrologist (kidney doctor).  As for cardiac and chest tubes, the plan was to do everything possible over the weekend to get the drainage down, then start discussing surgery.

Feeding tube went in Friday afternoon.  We went with an NJ tube instead of an NG tube.  Since she has been throwing up so much of her food, the NJ tube will sit in her intestine and bypass her stomach.  The hope is she will keep most of her feed down.  Her total caloric needs are roughly 1000 calories per day.  We are providing half those overnight via continuous feeds.  It would be 55 mL per hour over ten hours.  I thought to myself, that is way to much, she can't handle that.  But sometimes, the hospital can be intimidating and make you second guess yourself.

Guess what?  Overnight she threw up three times.  MOMS!  Always trust your gut.  Saturday the feeds were reduced to 30 mL per hour and we were able to lengthen the span to twelve hours.  The downfall of tube feedings: it takes away from her drinking during the day.  Her oral intake was set to 500 mL (16 ounces).  You know after a hangover, how you just want to chug drinks, water, soda, anything.  I have to assume that this is how Lucy feels, all day, every day.  Today (Monday), feeds were increased to 35 mL, which brought her down to 400 mL.  The best way I can describe what it's like......we try to give her liquids on the hour, so every one can know where she is at throughout the day.  The other 59 minutes are spent with Lucy crying, saying 'mommy, I want something to drink'.  I was spent emotionally by Sunday afternoon and was on the brink of tears most of the day (if not crying already).

Friday, we started two new IV drugs to help with drainage while also protecting her kidneys (Fenoldopan and Octreotide).  The reason we are using this type of diuretic is because Lucy's kidney's took a small hit after surgery.  They were worried with sodium issues that her kidneys were not functioning normally, hence the Nephrologist.  Saturday morning Lucy had liver ultrasound and thankfully it was confirmed that everything was normal.

Our work over the weekend did little to help with Lucy's drainage.  Lucy's has two chest tubes (one was draining minimally, the other has barely decreased in output).  I was convinced they would first thing we would have a definite yes for surgery.  However, Monday morning, Dr. Ilbawi decided he wanted to see an echo before making a decision.  The cardiologist okay'd the tube that was not draining could be taken out.  During removal, Sara (one of the APN's) noticed the other chest tubes sutures were almost out.   Her concern was, that during the night they could come undone and the chest tube would come out causing major damage.  She spoke with Dr. Ilbawi after he reviewed the echo and for safety reasons, mid afternoon, they pulled the second chest tube and placed a new one on her right side under her armpit.  They made some medication changes and are going to see what the output looks like in the morning, then make a decision.

One bright note of Monday, was we finally found something that Lucy will eat.  We were able to concoct a smoothie using no liquid, that allowed her to drink it through a straw simulating drinking.
I think she was so excited to 'drink' she finished the whole thing.  Only to throw it all up 20 minutes later.  Our goal is to get her to drink 500 calories (or more) worth of smoothies during the day in hopes of stopping the continuous feeds and eventually getting the tube out!