5/30/18 - NJ Tube

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I have been extubated and breathing with the CPAP help for like a day and a half now; i am doing very well. I can even have the mask off for a short time and am okay. Hopefully someday soon, I can just have a small nasal cannula. I'm quite happy with all of this, to be frank. It's nice. I can sleep easier without the tube gagging me and gunking up all the time. It's safer and easier for me to move around, too. I am up and down in my Boppy pillow, sitting up throughout the day. I can lay any way I desire for the most part and don't even mind my right side much now. It's become quite comfortable, honestly. I fall right to sleep. I get to sit up with my Mom and get snuggles every day now. I also, tried tummy time today and it went great!! I feel so free, for the first time in my life!

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Today wasn't a bad day by any means, but it wasn't all sunshine and rainbows either. I enjoyed all the position changes and I got to have food today. I have been starving for a day and a half and finally got to have some milk! The things that weren't so good today were: This morning, bright and early, I had an NJ Tube placed. The other thing was the scope down my throat.

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So, to update you guys, I have had a NG tube for some time now...that stands for Nasogastirc (through the nose, past the throat, and down into the stomach). This is how I have always gotten milk and medicines sometimes, too. I still have this tube, but now it will only be used for the occasional medicine and to help me release air from my tummy when it needs to, too. The new tube, the NJ tube, will be for just feeds. A nasojejunal (NJ) tube is a small tube that is passed through my nose and guided into my jejunum (small bowel). This kind of tube is used to feed children, like me, who are not able to get enough nutrients by eating. The main reason for me to have this tube now, is because I have been extubated. They worry now, that because the tubbing from the ventilator is no longer in my throat, and since my vocal cords and throat muscles are very weak and do not function well, that I am at a higher risk of doing something called aspirating. Mom said that aspiration can mean a lot of things, but in general it's kind of like when something "goes down the wrong pipe". It can make you choke and make it hard to breath. If you aspirate badly, i may now be able to breath, could come up with pneumonia and even die (that's probably a bit of a stretch...but possible). So, not having a bunch in my tummy for me to spit up while my throat is healing is a good thing. The milk goes right to my intestines and strait to work instead :)! (It's the yellow tube in the picture below.)

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The care team saw that my vocal cords and throat muscles aren't in the best shape by looking at them with a tiny scope today. They put the scope down my throat to view the integrity and function of everything. The right side of my vocal cords are damaged/paralyzed. This could be as a result of having my ECMO cannulas on that right side, I was told. The ECMO procedure I had (to place the two cannulas in my neck) required surgical dissection of my carotid sheath on the right side of my neck. This is very close to the nerves that help my vocal cords work. Sometimes vocal cords get paralyzed because of how close everything is. It might resolve itself and heal with time and therapy, now that the tube is out, but I may also need surgery to fix everything up, too. Hopefully, no surgery. 

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It was a very tiring day. I was wiped out for therapy, but still managed to sit up and stretch. I'm happy for the sitting time, but I was ready to nap. So, the girls laid me down and I fell asleep. Thank you for all the sweet letters last night! I love so much, hearing from everyone who cares about me. I know I'm just little and you may feel a bit silly, but I can hear and feel the words you tell me. Mom reads me your letters every sinlge day. Sometimes, twice. Keep praying that I continue to do well. That I stay this way, strong, until my heart gift comes. Pray it comes soon. Keep my family and my someday donor's family in your prayers, too. Night Nite guys.

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