7/4/18 - Second Day Post-Op

Well, let’s start with last night...not good. The care team struggled keeping me sedated and comfortable all night. I would cry and throw a fit without opening my eyes; I kind of think I was delusional from all the medicines, but I can’t remember. It was a long and nerv-racking night. My blood pressure really scared everyone, because I would be upset and spike it. They were worried about me being hypertensive and the risks associated with that. So, after throwing many different medications at me and doing everything they could, they were finally able to help me settle. This happened a couple times, unfortunately...it was a long, stressful, scary night. Today, though, was much better. My bro-dude was very proactive about my PRN medications and on top of his game. I went thru the day with some slight awake periods, comfortably. When I began to get upset, he made sure I was taken care of. I did very good. Everyone was very proud of me. 

At one point today, I opened my eyes a little and looked at Mom while she rubbed my head. It was so nice to see her there. She’s always there for me. We held hands and I squeezed her finger to let her know I am strong and okay. Later, after I went back to sleep, I felt someone rubbing my leg and woke up to see my therapy girlfriend was there to give me my edema (swelling) massage. She does it to help move fluid around and help the swelling go down. My face and legs are where I have most of my issue from being post-op, so she concentrated there. I’m actually looking pretty good. My skin is a nice pink color, not so pale, like before. I don’t get the marbely looking skin when I get mad anymore. Now, I turn red when I’m mad. I wrapped my toes around her when she went to rub my feet, though...you know I don’t like my feet touched! She and Mom talked about about a little boy that was here, whom like me, had heart issues. He had two VADs and was able to be up and playing, doing therapy, when he recovered. I really want that; to be able to be out of my bed when my body has healed up enough. It will be so nice! So, I’m hopeful for that, after ease-dropping on their conversation. 

The care team still seems very happy with me and the decision to do the surgery. Mom was able to talk to my doctor for the week and discuss my future some, today. We decreased the amount of Epinephrine I have to get and went down on some other things. I was getting NO2 thru my ventilator to promote healthy dilation of my veins and arteries so blood can move throughout my body easily (it also helps prevent red blood cells from sticking together to create dangerous clots and blockages). They may wean that off tomorrow. I may also have the chest drain tubes (three of them) removed tomorrow, if all goes well over night. In the ideal world, the plan going forward is to get the Epinephrine weaned off, down on the sedatives, get off the ventilator and get bigger/stronger before my heart transplant comes. So, we will see how it goes! Hoping for the best. Please keep me, my family and my someday donors family in your thoughts and prayers tonight. Good Night and Happy Independence Day 🇺🇸❤️💥

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