Finally Something That Makes Sense

Last night we finally had an opportunity to talk with the resident from the NICU as well as Elias' surgeon about the spitting-up and G-tube. We explained how we had been trying to get someone to hear us out on why we were concerned, but were always cut off and told not to worry about it, babies do this. We talked with them at different times and our resident (who is not the one Katharine talked to on the phone the other day, thank god) listened and actually gave us a clear logical answer that did not revolve around what other babies do. She explained that because of the anatomical differences Elias has, plus the size of his stomach being very small this could cause him to reflux in a much different way. Plus with the dilation being fresh and his esophagus being naturally small because of his size it is possible that the connection to the stomach which constricts to keep stomach contents down could also be exposed to some dilation as well, making the pathway wider and easier for reflux to come up. This is why is seems to be subsiding with time and not as frequent. WOW! If they only would have told us that six days ago when we expressed concern to begin with.  Even if that is not exactly what is happening, at least it makes sense and it is not the "all babies do it" answer. She did say that she wanted Dr Stewart (Elias surgeon) to chime in on this as well to get a surgical point of view.

Shortly afterwards he came in to speak with us. He informed us that he was aware of the spitting-up and while it is not a major concern for causing damage to the repair or stricture, He has been watching it closely. As long as the spitting-up does not get more frequent he wants to stay on course with the current timeline for dilation. He will determine more after that next scheduled dilation which is still a few weeks out. If it appears to be tighter then they will explore other options. He doesn't feel that Elias needs the Nissen surgery and neither do we. We also discussed the wonderful G-tube. His thoughts are the entry site (stoma) is looking better, and it is. They are continuing to put things on it to assist in that recovery. There is still leakage and when we asked how much is going to be too long, he told us he honestly did not know. They want to try a few more things before they resort to another surgery and replace it. As for the redness, his thoughts are it is cellulitis and he his considering an antibiotic for treatment. This would make sense again, because this would cause his CBC numbers to be elevated and pointing towards infection, but the blood cultures were negative.

We felt better after having these conversations. It is just a shame we had to go through so many others that seemingly brushed off our concerns before we got answers we could logically understand. That is all we really want after all. Elias is different and very challenging in many ways when it comes to medicine. While the end result might be the same, getting to that point is what can be challenging.