July 3, 2015

After a morning of consumer chaos for Independence Day, I finally made it in to visit with Steele. His chest closure went really well. The blood pressure is the main issue after closing the chest, so his night medical team kept a close eye on his HR, Oxygen and BP. A constant flux of all his systems are now being tested to see how the heart will adjust to a trial run without some assistance from the machines. His bedside still looks like something out of a sci-fi movie with all the alarms, flickering lights, digital readouts and tubing that he is connected to. I really respect what all the medical staffing has done to keep him alive and healthy, everyone in the PICU is so professional and always on their top game. Rachel and I can ask about anything related to his medical condition that is going on and they will find the answer.

Steele is beginning to switch over to his newly designed heart, we are so relieved he is fighting to take on all these challenges that are happening to him. I'm so proud of him for being so brave and strong, I had my doubts about how all this would settle out after seeing him post-surgery on Monday. I could not bring myself to take any photographs of him post-surgery because that image is permanently burned in my memory. As a parent with a child that has HLHS, you cannot prepare yourself for what an heart open surgery has done to your baby. I found it comforting to try and focus on the fact that Steele needed this surgery to continue living a healthy and fruitful life. Without it, well, I don't even want to go there.

I have a huge smile on my face today, for this first time in many months this whole feeling of medical turmoil may be finally reaching it's apex and now it's time to down climb that big mountain. I know Steele is going to come home with us very soon! It's a perfect way to celebrate the Fourth of July!

The next steps are to extubate the ventilator tubes and see how he will do with breathing on his own. It is not uncommon for these patients to be on assisted oxygen for a period of time once discharged from the hospital. One thing at a time, one step at a time, that is my new mantra for getting through the doors and going home with him.