For future Eloise

I am writing this post for a future Eloise, when she wonders what all the scars were from, and also the many curious people who ask about her now. 
Portacath: A permanent port for IVs. This hurts her a lot right now, because it was placed a week ago.
Broviac scar: She used to have a PIC and a Broviac, so meds could directly be distributed by the heart. 
G-tube: A button that directly accesses the stomach. She was fed through this before her esophageal surgery last December. Now it only vents the stomach, which means it drains whatever is in her stomach into a bunch of tissues I cinch together with a washcloth and a rubber band. It's totally disgusting. Slimy, full of bile and mucus...and I have to change it out with every diaper change, which is way more often than a normal baby needs a diaper change, because her food is inserted straight into the intestinal track.
J-tube: A button that directly accesses the jejunum in the intestines. This is how she being fed right now - a continuous, slow feeding, so as not to overburden the intestine (could burst). I try to imagine what it must feel like to have food directly inserted into the intestine. She never feels fully hungry, or fully satisfied. J-tubes are finicky, dangerous and gross. But she has nothing anatomically keeping anything in her stomach, so until she can manage her own reflux, she will be fed this way. 
Incision: I am imagining this scar will bother her the most after the huge scar on her back. This is where the surgeon had to cut open to place the J-tube. 
Yeah, it's a lot.

1 comment:

  1. It's hard to believe anybody will be looking at scars when they see that smile.

    What an odyssey.