Wednesday, May 21, 2014

Cora's Journey Goes On

This is Cora during the gastric emptying study. I fed her like normal and then they laid her under this gamma camera for hours. She didn't make a peep, eventually went to sleep, and did so well! When they first put her in there she kept looking around trying to find her Mama. That melted my heart!
I went around to the side so she could see me and she just laid there and smiled. This test took hours.
We followed up with her GI doctor and received all of the test results. The liver and pancreas were great and functioning properly. The poop tests came back negative for blood and positive for inflammation, another indication that she's allergic to the rice cereal. The gastric emptying study showed that she's a slow emptier with a severe delay. I already knew that, I just didn't know how bad it was. She said a normal baby empties in about 60 minutes and Cora empties in 408 minutes. Halfway during the study they gave her a medicine called Erythromycin which she turned out to be allergic to as well. Here we are at the Dr. Z's office.
 We then discussed what we needed to do from there. I had three options, #1 is to treat the slow emptying with drugs, either Reglan or Erythromycin. The antibiotic is out because she's allergic and I don't want her on Reglan because of the neuro side affects it had and because she'll most likely be allergic to that as well. #2 is to inject botox in the lower muscle in the stomach, the bottom sphincter. This will relax the muscle and let the food leave the stomach easier and quicker. There's only a 50/50 change of it working and if it does work, it will only last 1-3 months so it's a temporary fix. #3 is to do surgery. The surgeon will do a fundoplication, pyloroplasty, and a G tube. They will tighten the muscle at the top of the stomach so she no longer refluxes, make an incision in the bottom muscle so the stomach empties quicker, and inserts a feeding tube called a Mic-Key Gastrostomy Tube. This feeding tube will come directly out of the stomach and is semi-permanent, she'll have it at least a year but more likely longer.

I opted for #3 because it's a permanent solution and the other two wouldn't work with her. To make sure she'd be a good candidate for the surgery she had to have a N.J. feeding tube for a week. It went into her nose, bypassed the stomach altogether, and went directly into her intestines. The doctor wanted to see how she did with it and also wanted both the therapist's opinions.

Don't let this angel face fool you! She was intent on not having that feeding tube. She constantly pulled it out! Every time she did, I had to go back to the hospital for radiology to put it back in. On Sunday, she pulled it out twice. The first time we didn't even make it home before she pulled it out so I had to go back to the ER.

None of this would be a huge deal but Lance was out of town for all of it. Luckily I have amazing visiting teachers and friends who stepped in, took Kimball every day all, brought in meals, delivered ice cream, etc. They are amazing! It was a very, VERY difficult week without Lance but we survived. Barely.
The funniest thing happened, as soon as she got the feeding tube, she became a thumb sucker. A darn cute one at that!

1 comment:

Stephanie said...

She is so adorable! And it's pretty awesome that she takes after her aunt Stephanie in the thumb sucking department. :) (um when I was little, not now) ;)