Mountains and Mustard Seeds: Snowed in- RM 778

Abby is out of recovery and in a room at Children's. The procedure went well and we had a good long chat with her doctor. (he is so wonderful!) He and the surgeon took a good look inside and gathered more information to help us make decisions for Abby. Her previously done Fundopliction is no longer working and has become "loose" and "floppy." They found significant esophagitis. The pictures they showed us looked worse than previous scopes (in my non-GI professional, mommy opinion).

Her G-tube balloon wasn't as close to her pylorus as he had expected. This meant they didn't have to move her G-tube site! They did change her tube to a crazy looking contraption. The part on the inside of her stomach is very low profile and will hopefully interfere less with her pylorus functions. The outside part is a cumbersome mess of tape and tubing that can easily be yanked out! Even he apologized for it.

The plan is to use this wonkus tube for a 2 week trial period where we will attempt bolus G-tube feedings. (no tummy time) If she starts having a lot of vomiting during this time we will consider placement of a permanent "true" Jejunal tube, with no gastric access. (This would be a bummer for many reasons I won't go into right now)

Her reflux esophagitis needs to be fixed. He placed her on a third reflux medication in hopes that it will help her discomfort.

BEST CASE scenario: She tolerates bolus feeds again, doesn't vomit and isn't terribly uncomfortable thanks to the increase in meds. After the 2 week trial we change to a low profile G-button (yippee) and continue with life.

WORST CASE: She absolutely can't tolerate G-feeds and goes back to surgery. They would place a true Jejunal tube (bye bye normal feedings) and perform a redo Nissen Fundoplication.

EXPECTED CASE: She tolerates the feeds to a point, continues with the same discomfort she's dealt with for years, which looks like: finger biting, hair pulling, moaning and yelling until all hours of the night. We go back for biopsy results in 2 weeks and discuss doing the Fundoplication.

With what we expect to happen, she might be able to return to normal bolus (not a continuous drip) feedings without the horrible reflux.

We prayed for the truth of her discomfort to be discovered and a good plan to develop from the new information. The Lord is faithful and has accomplished that today! The next several weeks will probably be hard on Abby but we are narrowing down the options.

The fun part of this ordeal is that we got to drive in the snow last night! Generous friends let us crash at their home last night, only 10 minutes from the hospital (in the snow). Thanks Micah and Julianne! This morning was a winter wonderland with white roads and icicles! The boys are home having a blast with Papa and Grandma enjoying the rare treat. We miss them.