5/6/18 - The Ventilator Tube Saga

Today was wonderful. I had a restful morning. My girlfriend that is with me for the weekend sings to me; like Mom does. She sang "Wheels On The Bus" for me and some other songs I need to learn. I guess it's part of being a normal kid; learning "the songs". I don't know what a Bus is or what wheels are and why they go round-and-round, but she was happy singing to me so it made me happy. I like music very much anyhow. Mom and Dad got to me just a few minutes too late today. I had a big "surprise" poop planned just for them, but I ended up surprising my nice nurse instead. She's a good girlfriend and got me fixed up. So, when Mom and Dad were here, I just visited. I'll try to surprise them another day. I'm a funny guy.

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While Mom and Dad were with me, I was a little fussy with my ventilator tube. It makes me gag because it hits the ding-a-ling thing in the back of my throat. I hate it. So, I was a little upset but not mad. Mom thought it would be a good idea to sit me up in my Bobby pillow a while; since I really like that. So, I got to sit up a while. I dozed off for a good while and was dreaming. I like to tap, curl and stretch out my fingers and toes when I dream. Apparently, it's very cute. When I was done with my nap, I watched my mobile for a while. I like when Dad blows the critters so they spin fast. It makes me excited! Also, while I was awake and still sitting up, Dad was adjusting my mobile and I watched him closely. I followed his hand up with my eyes while he was reaching above my bed and then, followed his hand down until he gently bopped me on the nose. That stinker. I can see better now. I like to follow things with my eyes and look for people when I hear them. 

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When I was ready to lay back down, Mom gave me a quick once over and changed my outfit (she pulled my sleeves over my hands so I couldn't find my tubes to pull). I get sweaty very easy and when I was a little upset earlier in the day, I sweated my outfit up. It's okay though. She just wiped me down and slipped a new outfit on. I sat up for a minute with my nurse friend when we took the Bobby pillow out from behind me. I sat very well and was happy too. I just stared at her with my blue eyes so I could stay sitting up a minute. It felt nice. It also felt nice to be in fresh clothes and laying back down. I stayed awake for just a few minutes and then dozed off for another nap. I have to nap a lot because I am little. That is what helps me grow. I want to be big and strong someday. 

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Tomorrow is supposed to be "the day" again...my care team has made serious plans to go ahead and move my ventilator tube to my nose in the morning after they round. I will stop getting milk early in the morning and they will have to put me on a sedative and paralytic to make the change. The new tube will go thru my nose hole and down my throat instead of thru my mouth and down my throat. Unfortunately, it will have to be heavily taped to my face, too. It's a little scary to make a change like this, but I think I will like it better and be more comfortable. At least the tube wont make me gag anymore. Maybe I won't feel mad about it anymore if it gets moved, too. That would be good. So, I'll let you know tomorrow if they went thru with their plans. 

Please think of me tomorrow. Pray my tube change goes well and that it is a good thing for me. Pray there are not any setbacks because of the change, too. Pray that it makes me more comfortable to have the new tube in my nose. Pray my heart gift comes soon. Please keep me, my family and my someday donor's family in your thoughts and prayers please. Thank you so so much!! Good Nite.

PS. I like to hold my thumbs like this. Do any of you hold your thumbs like that? Do you do anything silly? Mom and Dad are recording my "quirks" so they remember someday the little silly things I do; in case I ask them. 

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