Yesterday was a really good day for Paislee and she so needed it after Thursday. There have to be cloudy days, but Thursday it was a thunderstorm in my house. It all started at 7:30 in the morning when she had her daily injection. She cried complaining of shoulder pain. I assumed she just slept on it wrong, but Paislee cried all day long in pain. So after calls back and forth to Vanderbilt and me freaking out she had some sort of infection, the surgeon finally called in some pain medicine on Thursday afternoon so that helped also. She only received three days of pain medicine upon dismissal from the hospital. Yes folks, that's right you have open heart surgery and only get three days and then they expect you to use Tylenol and Ibuprofen. Since Paislee came home with blood thinners, she can't have Ibuprofen so I used her pain medicine only as needed so it would last a little more than three days. Thursday, I had never seen her in so much pain. My mom stayed here and she told my mom she never wanted heart surgery again and she just couldn't take it anymore. Wow! Poor baby. She finally got to take her first bath in the tub with very shallow water for the first time. She was a little uneasy but it went okay. I also had to change her port for her injections. Oh my! Hats off to all you nurses out there, I can never ever be one. I was nervous all day knowing I was going to have to put a new one in. My stomach was in knots. This was my first time doing it without a nurse looking over my shoulder. I was scared to death. I don't know why but that is the most nervous I have ever been in my entire life. I guess because it was my child and a big long needle, not a short one and it's done. Did I mention LONG needle? I did it, because I knew I had too. I then had to take the old port out and it was going okay until I actually pulled it out and the blood poured, because Paislee is on so much blood thinner and it scared her. We made it. Whew. It's heartbreaking every morning and every night giving the injections because the medicine burns so much. I have looked on the Internet and tried to find something to do to not make it burn. Adults even complain that is burns so we have to deal with this for a minimum of three months. She might get used to the injection but I don't see how she could get used to the burning sensation. As for me, I will never get used to it. To hear your child scream in pain morning and night is something I would never wish on anyone. This by far is one of the hardest things as parents we have done. It's either do this or my child will die. I think about that every time I get ready. My child is bruised everywhere and has huge knots on her legs, but she still manages to put a smile on her face and she is my hero!! And I know in my heart, after the clouds and the storms, there's always sunshine!
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