9/6/18 - The G Tube

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So, tomorrow is the big day for the G Tube placement. A lot of confusion and questions have come up. My parents are also thinking a lot of what you've been asking about, but here are the answers. So, I will be getting a gastrostomy tube (also called a G-tube). It is a tube inserted through the abdomen that delivers nutrition directly to my stomach. Some kids, like me, have medical problems that prevent them from being able to take adequate nutrition by mouth. In my case, I have been sick as such a young person, that I missed a vital time in my learning/development. I missed the time in my life in which I had natural instincts to suck. So, now I am learning how to do that, how to move my tongue around (since I had a ventilator tube in my mouth so long and never learned) and more little things that are supposed to come naturally. So, the G Tube is a short term solution for my situation. It's one of the ways doctors can make sure kids like me (with trouble eating) get the fluid and calories they need to grow. right now, I have tubes in my nose (the NG and the NJ) that do the same job as this new G tube will do. The reason to do the procedure, is in short words "to progress". I am doing well with the nose tubes, but they make me gag and interupt my breathing making the O2 cannula nessecesary. We hope that by doing this procedure and then removing the tubes, I will do better at learning to eat normally, because I won't feel those tubes in my throat. Also, having the G Tube placed, I will try out feeds into my tummy again. This means that without tubes in my nose this time around, I may do better because I wont gag on the tubes and cause myself to puke the milk feeds up. Also, I will be at a safer risk of aspiration from puking if I do. So, get the G Tube placed tomorrow, start feeds to my tummy in a day or two after and hope it goes well. It's possible that I won't be able to handle the G (tummy) feeds and the care team may need to switch me back to getting feeds into my J (small instesines) like I have now. If that happens, it is very simple to convert this new G tube into a GJ tube. So, for now, lets just hope that I do well with food in my tummy! Prayers please! Other than that, I don't have much else to say about it today. Will be sure to share more tomorrow. 

I did have a nice day today. Therapies went great, Mom and I snuggled and played, I got good naps and smiles galore! I felt good! Well, I felt good all day except for during Speech therapy when she had me try something new and it made me gag...applesauce! YUCK! I hated it SO much! She gave me a small bite and I thought I might throw up. I was not a fan. Next time, let's just stick to Bananas and Carrots for now. Maybe, if we mix in some with one of those, it might grow on me? Eeeww! Anyhoo, I wanted to tell you that. Will talk to you tomorrow. Good Night! -Heath

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