4/7/18 - Endotracheal Intubation


Today started great. My nurse was lovely and took wonderful care of me. I had a restful morning. Then, when Mom and Dad came to my room I decided that I'd try to show them how much I hate my ventilator tube. I've had to be intubated my entire life, thus far. Having a tube down your throat is a bigger deal than you think. You'd hope a person would get used to it, but I still have days like today when I just hate it. The tube down my throat is connected to a machine called a ventilator. This machine is used for many things, but in my case it helps me breath and also it's helping take pressure off my heart by changing the pressure in my chest cavity. A quick way to think about it is that instead of me breathing normally and pulling the air into my body, the ventilator pushes air in. Less work for my body. Well, I think that's the correct way to describe it? My doctor tried explaining it to my parents a while back and said something like that, but also that it is much more complicated. So, that's the general idea. Anyways, it's annoying and i hate it. I get myself so worked up and upset about it some days that i work up a sweat and raise my heart rate sky high. My mom gets very scared when I act like that because she is afraid I'll have a stroke or heart attack from stressing my heart. I just get mad sometimes and the nurses always calm me down with medicine if comforting me doesn't help. Mom needs to just chill. She's a worry-wart because she loves me. 


Dad read to me today from your newest letters. Thank you all again for your kind words, prayers and stories. I liked hearing about the weather outside and that other kids like me are doing good and are big. I hope someday I will be big and strong, too. One nice lady said she has a Heath in her life. It was neat to hear that. I was named after Heath Barkley off the western TV show Big Valley. Mom always had a big crush on him growing up and said if she ever had a boy that she would name him Heath. Well, here I am! ha ha. My middle name is Wayne. My dad grew up tough and doesn't have a big family, but there are several very special people in his life; one being Wayne. He's a nice and very funny man. My dad has always looked up to him. So when my parents found out I was coming; my name was easily Heath Wayne. I like it. It's a strong name. I am strong. 

Please say a prayer for me tonight If you would. Pray that I stay comfortable every day and that I stay stable until my new heart comes. Please pray for the donors family and my family. Thank you. Good Night 

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