There Are No Straight Lines In Nature

They say there are no straight lines in nature. Pan's corollary: More so with Ethan.

We got back from Children's just now. This appointment was to assess the viability of the g-tube and true to form, it's not that simple with Ethan. While everything with his esophagus, stomach and basically his whole upper G-I checks out, it is unknown if Ethan *actually* has acid reflux. He has always been put on medications for it because it was assumed that he had it to some degree and he always seemed to do a little better while on the medication: but he has never actually been formally diagnosed with acid reflux. This has now become very important. G-tubes, once inserted, can cause acid reflux or aggravate an existing acid reflux condition. Since the whole point of inserting the g-tube is to make things generally better for him, if it will aggravate an existing acid reflux condition, then the simple g-tube insertion is no longer an option.

Ethan will undergo a 24 hour test (a ph probe) to monitor his esophagus and conclusively determine if he is indeed suffering from acid reflux and if so, to what degree. His appointment with ENT this coming Monday won't be conclusive or definitive enough. This test has yet to be scheduled (probably within the next two weeks) and will require an overnight stay in Children's. Results from the test should be forthcoming within the 24 hours following. From there, they can decide what they will do. If he has no acid reflux or it is not significant, they will go ahead with the simple g-tube insertion.

If the acid reflux is significant, then it gets quite a bit more complicated. There are a few options, none of which we find particularly attractive. The primary option is to then undergo a laparoscopic Nissen fundoplication (http://en.wikipedia.org/wiki/Nissen_fundoplication). The basic point of this is to create a one way valve to allow food to pass through to the stomach but prevent the acid from coming back up the esophagus. Then the g-tube can be inserted. However, side effects from this (there are many, actually: see the article) are that the stomach may initially not be able to empty as well as before and gas cannot travel back up the esophagus (so he can't burp anymore). So this means that the feeding patterns may need to change and he may need to be burped through his g-tube. The Nissen surgery is meant to be permanent. However, the stitches used in the procedure may come loose with time and if so, the acid reflux returns. Another option is to leave the ng-tube (what he has now) but thread it past the stomach directly into the small intestine. However, this is obviously something that can only be done at Children's and if we do this, and if Ethan should happen to pull out the tube, we *cannot* reinsert it - it means another trip to Children's to reinsert the tube. While this is an "option", I doubt it will be considered a viable option - since the whole point of the g-tube was to eliminate the ng-tube in the first place.

We were told that we should hear by Monday about when the ph probe will be scheduled for.

It just keeps going on and on... :-(

-bob


Throughout this whole journey with Ethan I have felt sad or stressed at times, but have really tried to find the positive in everything...something to be thankful for or something that has gone positively whether it be that Children's Hospital treats Ethan's condition and we don't have to fly anywhere, a successful feeding or passing a test. Any progress at all. Today was the first time (even with him being in the NICU at Evergreen, all the medically related appointments, or being admitted to Children's) that I felt frustrated and depressed...just generally down. I know Ethan's got the best docs, physical therapists, and nurses and i'm thankful that they are so thorough and take such good care of him...I guess i'm just frustrated that nothing has been as straight forward as I would like it to be. There always seems to be a few detours to get to the end of what we thought was a straight road and there are a lot of roads to travel still! I need to remind myself that God never gives you more than you can handle. Whenever Ethan looks at me with that little crooked smile, my heart melts and that reminds me that all this work is worth it! I also need to be thankful that Jonathan is healthy and is such an easy kid. He has put up with all of this and is such a good big brother!

-Dina