8/26/18 - NG, NJ, G, GJ...Ahhh!
What a crazy mess this feeding extravaganza has become! Let me tell you! Confusing, frustrating and all around a pain in the gut. I have been thru a lot in my short life, so far. A lot of very difficult things. I think learning to eat again and training my body to accept food, it has to be the hardest thing yet. I think maybe because it seems like such a simple thing and then adding in the hopefulness of the possibility of home...it makes it incredibly frustrating, scary and exhausting when my body says "No!" to food. So, today, the team replaced my feeding tube from an NG (in my tummy) to a new NJ (skips my tummy and goes to my small intestine)...
It feels like a set in the wrong direction. Backwards. And to make things even more frustrating and confusing, the care team is planning to have me undergo a prcedure to place a G tube. A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to my stomach; like the NG does. It's one of the ways doctors can make sure kids like me that have trouble eating get the fluid and calories they need to grow. So, here's the confusing with that...I can't tolerate the NG feeds right now. So, how is feeding me into my tummy a different way going to do anything? It seems pointless. I guess they can make the G tube into an GJ tube if the G feeds don't go well, too. A G-J tube is a single tube that passes through the abdominal surface, into the stomach and down into the second part of the small intestine (the jejunum). The tube stays in your my stomach because there is a balloon inflated inside the stomach to help “hold” it in place. So many things they want to do. Its completely overwhelming, confusing...hmmm. Just feed me carrots. He, he. That's what they should do, but I can't live on carrots. I'll turn orange.
I had a better day today in the midst of it all. I even felt up to playing! I kicked my rattle ball and this block toy that lights up. It played music when I kicked the buttons. I had a great time playing with Mom. I did sleep most of the day though. No pukes for over 24hrs now! I think the antibiotics have really helped. Maybe it really was a bug making me sick? I don't know? Well, updates tomorrow with all of this...talk then. Good Night. Hugs! -Heath