5/9/18 - Big Day!

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Well...today was the day! This noon, my care team came into my room and changed my ventilator tube. It was a lot. To move it from my mouth to my nose is a cautious process. For the procedure, they gave me a combination of sedating medication and a paralytic. Paralytic medicine only keeps me from moving; it doesn't have an effect on pain. The sedation medicine makes me sleepy. It keeps me from experiencing pain or remembering the experience of the surgery. Without the sedation too, I would be wide awake during surgery and unable to move. If they only gave me a sedation and no paralytic, I would be asleep, but able to move during the procedure. This would make for a very dangerous situation for my care team, who were working on a very delicate area of my body. During a procedure like what I had done today, even the smallest involuntary movement, could result in a serious error. Something like a sneeze could be catastrophic. So, it is absolutely necessary that I never moved during all the fuss today (except to breathe). So, that's why I had to have both medicines. It's called "general anesthesia". The tube still goes down my throat to fill my lungs with air, but now it goes in my nose and down my throat so i don't gag. So far I really feel odd. I'm not sure what I think of the change, but Mom says after a few days, she thinks I will like it much better. I hope I do. Changes are so scary and I don't like any changes. Mom had a hard time today seeing me upset. She went to the back of my room so I couldn't see her crying. She feels so guilty that she brought me into the world just to have to go thru all of this. It's really hard on days like today, when coming off sedation and upset. She just wanted to pick me up and comfort me, but we can't do that yet. It wasn't the hardest thing I've been thru in my life. This procedure was quite simple compared to a lot of other things that I've been thru. But, she still wanted to hold me. Hopefully, someday soon we will be able to snuggle when I need extra love. Anyhow, we are very excited about the new location of the tube and the potential it will make me more comfortable. I want to check out my mouth now with my hands and use a nookie soon, too! More baby stuff! That's exciting. Now that the tube is out of my mouth, the nurses are putting stuff in my mouth to get rid of some Thrush I developed. Thrush is a yeast infection in your mouth basically...it's common for babies and not usually harmful. It will clear up soon. Mine isn't bad. So, that's another thing. Well, here is the new me (i was just coming down off the medicines, so please beware that some pictures may not be too pleasant to look at):

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