October 20, 2016

We are three days post-op and I have been holding my breath the entire time. I am afraid to feel anything that resembles relief. The doctors and nurses keep telling us that recovery often takes two steps forward, and one step back and repeat. I haven't updated because these last few days have been a cycle of hurry up and wait. 

Louis is stable. Things are moving in the right direction; slow and steady. Right after surgery, Louis' heart was using a heart rate pacer. It is not quite a pacemaker, as it doesn't go inside the body. But it does have two small leads that are attached to his heart which monitor and help set the pace for his heart rhythm. The past two days, his heart was having episodes of  transient postoperative JET (junctional ectopic tachycardia, which means a rapid heart rate for his age, that is driven by his cardiac conduction system). Basically, the electricity of his heart was having big jolts, which made his heart race, which is normal after a repair of a congenital heart defect. This has seemed to sort itself out. Although the pacer wires are still attached to his heart, the machine is turned off completely and Louis is doing all the work of pumping and pacing his heart. 

Louis has three chest tubes in which are draining fluid from around his heart and lungs. Fluid in the chest cavity is normal after a major heart operation. Yesterday afternoon the center tube was removed.

Tuesday and Wednesday, the doctors and nurses were concerned about additional fluid building up in Louis' belly. Although the retention of fluid is normal after surgery, they want to be sure the fluid isn't adding pressure on his kidneys, or pressing on his lungs. This could make urination and breathing more difficult. After a day of hurry-up-and-wait, they decided to add a drain to his belly, to relieve the pressure and eliminate the fluid. 

Since the fluid is being drained, Louis' kidneys are doing a great job and the ventilator is doing less and less work in helping him breath. They will continue to ween from the vent and we are hopeful it can be removed today or tomorrow. 

So one tube out, and one tube in. Now we wait to ween from the ventilator, remove the remaining chest tubes, and make sure there is proper blood flow to the intestines until he can be given any food through his feeding tube. All of this depends on Louis. 

He is so pink. My baby is pink and not gray. I never thought I would worry about such a thing.