6/30/18 - Sick Of Being Sick

Dad was here today to see me. It made me so happy! We played with my mobile together. He blows the little mobile animals so they spin really fast and I love watching them go. Sometimes he pretends to eat my mobile animals and it makes me giggle. He’s so funny. Mom was helping me box with my hands and dad was holding my pony toy up for me to kick. I had a great time. I’m getting good at moving around and all of the things.


I wasn’t feeling the greatest today, but I was getting medicines to help. Morphine is hard on me, but it’s been a friend of mine my whole life. I barely get thru a day without it, nowadays. After playing with Mom and Dad, I was feeling restless and needed to change positions. My bro-dude is here to help me out all weekend, again, and he can usually get me comfortable on my right side...so, we tried. I just couldn’t do it, though. I got myself worked up and the more worked up I got, the more I just lost my mind. I needed Morphine to help me get my numbers back down to normal ranges, ASAP. Sometimes, I just can’t relax on my own and since my heart can’t take it, I need medicines to help. It was a good day for the most part, even with the small meltdown p, though. I did have to go back onto antibiotics today for another “dirty” culture that came back from my labs. This time, in my breathing tube. I hope it won’t mess up my surgery date, for the Berlin Heart. Mom and Dad were able to talk to another Doctor friends today, about the procedure. Mom is still very disturbed and upset. It’s hard for her to think of anything happening to me. The surgery is a big deal. They have to cut my chest wide open and do surgery on my heart to install this new pump set-up. It’s scary for us. I’m brave, though. I’ve been thru some pretty difficult things in my life, this being the most...so far. I think I will be very sore from them opening my chest up. I will be uncomfortable. I don’t like changes, as you know. Hopefully, after a few days though, I will be able to feel better and the machine will help me feel stronger with a little time. I wish my heart gift would come this weekend, though, so I could just avoid the surgery all together. That would be such a blessing. I’m so disappointed. We all thought that I’d have my heart gift by now. I’ve been on the waiting list for nearing 100 days as a 1A listee. This is all for the birds, let me tell ya’! I’m so sick of being sick. I’m not going to go into detail about the Berlin Heart and all that entails until Monday. So, watch for that coming up if you have questions. 


I ended up sleeping the rest of the afternoon. I needed it. Hopefully my surgery goes well Monday and I am able to recover quickly and strongly. If I do, I could come off some medicines and if I’m lucky, there is even a possibility of the ventilator being taken out again. This Berlin Heart is scary, risky...but we think the benefits will out-weigh the risks. At least we hope they will. So, I’m just hoping and praying for the best. Please pray for me, my family and my someday donors family. Thank you. Good Night. Love, Heath

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