7/21/18 - Patience

We could never learn to be brave and patient, if there were only joy in the world. - Helen Keller

They went ahead and turned off my paralytic medicine and today, I wiggled my toes and tapped my fingers for the first time since my surgery. It was nice to stretch a little bit. I’m not really awake, just having reflex-like movements. It’s good, regardless. The care team watched closely, to be sure that I was not moving too much, though. Just a little bit for now. ECMO is going well, so far. I think Mom is starting to settle down. Her and Dad had a good talk and she seemed more accepting of everything today for the most part. I'm holding my own. Well, not really...the machine is holding me, if anything. I am, however, doing okay in general. My doctors have been telling dad they are somewhat confident that my new heart is doing okay and will come out of ECMO functioning better. That is the hope. For now, we have to be very patient. I have learned patience thru all of my adversities. I take things as they come and am always very brave. Even today, with ECMO and sedation, I am fighting and wiggling my fingers and toes. It's my way of showing Mom, Dad and the care team that I am still here fighting the good fight. I want to get better. 

I have more edema today throughout my body. The care team doesn’t seem overly concerned about it. It is normal to have some swelling after a major surgery and they can help it with medicines. They went up on my diuretics today. The pulmonologist came in and worked with me today. She did a scope to check on my lung condition. It’s called a Bronchoscopy. A Bronchoscopy is a procedure that looks inside my lung airways. She inserted a bronchoscope tube, with its light and small camera, through my ventilator tube, down my throat into my trachea, and to the bronchi and bronchioles of my lungs. She saw some issues. I have some blood pooling in my one lung and it isn’t as open as she’d like to see. She also said, because I was a Cardiomyopathy baby, one of my lungs is stronger than the other. She said adjusting my ventilator settings should help. So, she increased my breaths per minute rate and the pressure on my ventilator this afternoon. Hopefully this isn’t the start of a new problem. Some issue is just normal post surgical stuff, so we hope it stays that way. 

The plan is to continue to rest the new heart until Monday or Tuesday. So, until then...patience. Please continue to pray for me, my family and my donor’s family. -Heath

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