Update

First off I want to say thanks for all the prayers and concern for Wendy! I wanted to get in a quick update for everyone. Also, for everyone that isn’t used to the feeding tube/medical lingo, I’ll try to add a link or explaination for all the weird terms I may use.


Dr. Pilzer (who is super nice, btw) fit Wendy in today, thanks to another mom telling her about Wendy. (Huge shout out to Ashley McGee for helping us out big time today! As Dr. Pilzer said, sometimes it’s not what you know but who you know.) Her first suspicion for the vomiting is reflux, since Wendy was diagnosed with it at just a few days old. Our first attempt to fix it will be switching from Pepcid to Prevacid. If in 3 days the vomiting is no better, we will add Bethanecol to her list of medicine as well. If Wendy is still vomiting next week, she will have a PH probe study. We are planning on doing that between December 31 and January 2, which also means we will be canceling our surgery appointment. (I’ll touch more on that later.) If the PH probe study comes back showing Wendy has severe reflux and that is indeed what is causing all of her vomiting, she could possibly need a GJ button in place of her G tube button or she could have to have a fundoplication.

GJ stands for gastronomy-jejunostomy. It’s a tube that’s placed in through the stomach (where her current button is) and extends through her stomach into the jejunum (small intestine).  I’m not exactly sure if/how her intestinal malrotation will effect this, but I suppose we’ll deal with it, if/when it becomes an issue. This also means, if Wendy can only survive with the food being put in her intestines that she will never eat anything by mouth.


The fundoplication is a surgical procedure that is used when medical therapy fails.  In a fundoplication, the gastric fundus (upper part) of the stomach is wrapped around the lower end of the esophagus and stitched in place, which reinforces the closing function of the lower esophageal sphincter. If a fundo is needed, it will have to be done prior to her having her final surgery of removing the colostomy. Dr. Pilzer also said, before we remove the colostomy, we need to get Wendy on a diet of a lower calorie formula and see if her muscle tone improves. She said with a child with low muscle tone and high calorie formula (which already can cause constipation) can cause severe, life-threatening constipation once the ostomy has been reversed, which often results in them placing a colostomy again. So for now, the ostomy reversal is being put on hold (since it’s not a life or death situation right now) and her keeping her food down is.


With all that being said, Dr. Pilzer was not at all concerned about Wendy still being on formula or her small size (which those were two things I was concerned about with taking her to a gastroenterologist). She said children with other common chromosome abnormalities have their own growth chart, so we are just having to make our own chart for Wendy, since her anomaly is one of a kind. She also said Wendy was not considered a “failure to thrive” because she is proportionate, growing at a steady rate, and she has baby fat rolls. Dr. Pilzer said Wendy is just considered extremely short statured.


All in all, I’m not wanting to have to go to the extremes of having another surgery, and I am hoping that the Prevacid (and if needed the Bethanacol) will fix the problem. However, I am very happy we got Wendy seen about today and I feel much better since we are working to figure out and fix this issue.