5/4/2018 - TPN

I had another pleasant day today. I didn’t have too much going on just a nice relaxing day. The sun was shining in my room and i was all snuggled up in my cozy blankie. Mom talked to me and read to me some the letters from you guys; it was really sweet. It seems like my favorite girlfriends are all gone this week; I met a new nurse several days ago. She thinks she will be a regular with me now. She pats my butt like Mom does and reads to me. We get along well. Missing my girls though. 

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During the rounds that the doctors do every day, they were talking about maybe taking out my ventilator tube again. It’s kind of an ongoing discussion lately it seems. It’s a little bit scary to think about not having it, because if I were to crash one day and I wasn’t in a good enough state to re-place it...it’s just a little bit scary to think about. My mom and Dad really don’t want to see me have to go back on ECMO or on VAD and just the thought of anything happening to me kills them inside. I have gone through a lot in my couple months here in this world. Hoping to not repeat the bad stuff. Praying that if they decided to do anything, it will be to just move it to my nose instead. I hate big changes. They will do what's best, though. Things like these decisions are very hard for my parents. My life is very literally in the hands of strangers that we are just learning about...that is scary. Read more about that in my blog, "Trust" from a few days ago. 

Besides the ventilator talk, I got to wear a cute little outfit today, again. I still like wearing clothes. All my friends here thought I looked adorable in the orange and white stripes and I had a puppy picture on my side. I like that a lot. Yesterday, I had dinosaurs on. I like them too. I still think I’m starting to learn what colors are. I don’t understand their names yet, of course, but I like to look at them. I like orange. Orange is a manly color and you know that I love blue and all bright colors. That's why my special wall is so awesome. I love to see everything. I'm getting more and more curious about new things.

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Anyhow, so today I just slept most the day it was really really nice! All my vitals looked really good and I was the best that I could be. The team, they’re still working on getting my feed amounts up to 65 ml/3hrs. Right now, I’m just at 30ml/3hrs and I’ve never been much higher that successfully, so I’m a little bit nervous. I think I can do it? My body is trying it's best and with all the medicines that I’m on that are working to help, I think I might be able to handle it. If I can, I can get less TPN. When I am not getting any other true form of nutrition (besides my inadequate amount of mom's milk right now), the TPN formula helps me to get optimal nutrition. TPN stands for Total Parenteral Nutrition. Healthy people, like my Mom and Dad, get their nutrition via the digestive tract, or the “enteral” route. Me however, I get mine “parenteral”. That means that a route other than the digestive tract is used to obtain nutrition. Which, in my case is via one of my IV lines. My special TPN includes proteins, carbohydrates, fats, electrolytes, vitamins, and minerals to meet my dietary needs. Getting good nutrition will give me a better chance of restoring my health; or at least help it maintain. 

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So, when you have time to think about me or if you pray for me tonight...the things I need help working thru are being able to handle getting more of my mom‘s milk (that my body will digest it well and that my heart can give my enough blood). Also, please pray that when I get enough milk they can take me off of some of the TPN and lipids (those are the things that are helping me survive right now).  Please keep me, my family and my someday donor's family in your prayers. Pray my heart gift comes soon, please.

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