IV Free

  Thursday morning we found out that Lucy had an ear infection.  This explained the crying and agitation on Wednesday night and all of Thursday.  The nurse noticed some draining from her left ear late Wednesday night.  They started her on antibiotics right away.  By Friday, she was a different baby.  We both felt a little relieved knowing it wasn't an issue with her heart.  And hopefully when we are home we'll be able to tell the difference

Over the weekend, Dr. Penk stopped all of her heart medication.  He said her recovery was going well and her heart rate, blood pressure and oxygen saturation were where they expected them.    On top of that, they removed her oxygen and were planning to start her feedings every three hours.  She is still on the formula enfaport due to the Chylothorax.  The draining from both of the tubes was still pretty significant so they adjusted the formula to a mixture of half enfaport and half a fat free formula.  The output has decreased, so the doctors want her to be back on enfaport only before they remove the tubes to ensure that the draining doesn't increase.  If everything goes as expected we think the chest tubes will be out by Wednesday.  Lucy will be almost mobile then.

She was up all morning and then after her one o'clock feed, out like a light.

The last two medications Lucy is receiving through IV are the pain and sedation.  On Sunday, the pain medication was stopped and the sedation medication dose was decreased.  They could not completely stop the sedation because it would be needed when they remove the thoracic line.  If you remember after Lucy's hybrid, they removed her thoracic line and she coded.  Needless to say we were nervous.  Luckily, they sprung the removal on us.  It was originally planned for removal on Wednesday, however, due to the decrease in all her meds they did the procedure today with no issues.  Thank God!  Then after the procedure they stopped the sedation medication.  Lucy is officially IV medication free.  I know, we can hardly believe it either!!!

So what's the next step?  It would be moving to the floor.  'The floor' is where patients go before they get discharged.  In order to get there, Lucy needs to be off all IV medications.  Although she is there now, due to her history it is likely they were keep her in the surgical unit for a little longer than normal.  We will start the learning process on administering her medications, placing her NG tube and anything else we will need to know how to do to have her home.  Before she is discharged, we will spend forty eight hours in the hospital doing all of the above.  Pretty much taking care of Lucy like we would at home but with the nurses there for support.