Well we know today nothing more than we did yesterday in terms of Elias surgery. As far as we know, according to the Pediatric Surgery resident it is only to do the dilation. She said there was talk about doing something with the G-tube, but from what she knew, "since the leakage was better they were not going to do anything." First of all, where did they get that information. Elias' nurse chimed in quicker than we could on this, and we were impressed primarily because this was the first time she has ever taken care of him. She really doesn't have much knowledge of the history. She told the resident that the numbers on the flow sheet at best are vague accountings. She continued by telling her that you can only account for what you can measure, you cannot measure his soaked clothing or bed sheets, not to mention any leakage that occurs before the measurable dressing can be applied. These need to be considered as well, and they surgery team is simply not seeing this. We looked at the resident and simply said, yes what she said, but added before it was 1-2 ml's per 3-4 hours, now it is 5-6 ml's. We closed with the simple question of, can you explain how that defines improvement? There was no answer, obviously.
As if we needed another reason to become irritated and stressed, apparently, yesterday a nurse practitioner was suppose to come in the afternoon and do the "plug and play" (as I call it) again. This is an attempt to have the stoma close creating a tighter seal. They never came or called to say; they were not coming, they changed their minds, they did not think it was worth their time etc...nothing, nada, zilch. This is all we will say about that, as I'm sure everyone by now knows exactly what we are thinking.
I think we internally are struggling with the desire to put our foot down and demand that they redo the G-tube, versus putting Elias through unnecessary surgery. We simply felt that if it came to that, while he was under general anesthesia for the dilation it would be a good time to do just that. That window of opportunity is quickly closing and it will be probably 3-4 more weeks, if not more, before another dilation is preformed. Then the chance for the surgery we are attempting to avoid is much greater and very likely. Unfortunately this appears to be one of those times where parenting emotions get in the way of realistic expectations. Logically, we feel as though we have tried and exhausted all the options, including "watchful waiting" until it has turned into beating a dead horse. After all of that, what is there left to try other than redoing it all together? The point, as we mentioned before, is becoming greater than the tube itself. It is about all the contributing and underlying causes the leakage has towards other problems, issues, and concerns related to Elias health, that are being overshadowed.