Samsmom: Life, Joy, Loss and Loving your Mitochondria

Gastrojejunostomy Tube (GJ tube)….try saying that ten times fast. I’m still working on one time slow. I should probably learn how to say it.

Because Samantha now has one.

Samantha’s belly pain and persistent pancreatitis has told us that right now, her stomach can’t really handle processing food. So, for the time being, Samantha’s formula will go directly into her small intestine where many nutrients are absorbed into the body. Bypassing the stomach will also give her pancreas a rest, which is good and necessary. Our only other option would be I.V. fluids for an extended period of time. The GJ tube gets us home.

Samantha is happier not having anything in her stomach. We’ve seen more smiles and great interaction. She is relaxed and doesn’t mind being repositioned or moved around.

The downside to a GJ tube is that the small intestine can’t handle a lot of volume. Samantha will receive slow drip feeds through most of the day meaning she will be hooked up to a feeding pump about 20 hours a day.

A year or two ago I would be really upset about Samantha being hooked up to a pump but right now a happy, comfortable, interactive girl trumps all.

Did I mention a happy, interactive, almost-keto free, seizure-free-for-three-days little girl trumps all???

Well it does…apparently our lovely sign and all your thoughts and prayers are working.

Samantha has received so many wonderful Children’s Hospital Cards from you all….well we just had to show them off; they now take residence on her door, with the sign. People stop to read ALL her messages…thank you.

We also got a special little present today from a special little family….a ‘frog angel’ pin for Samantha. You know how I feel about angels….and frogs (see December post). She is now wearing the frog angel pin on her pajamas. Hubby says she probably shouldn’t sleep with it on her pj’s….oh alright fine. The frog angel is now hanging over her bed, another symbol of all that is watching over Samantha tonight.