I'm sorry for the late post but I have been holding Coop since the Dr's assessed him at 7.
Charlie had to have his feeds turned off 3 times last night due to not emptying his stomach. Dr. Such-Neibar came in today to give me the plan. We are going to place another NJ tube (a tube from his nose to his intestines that bypasses the stomach-what he originally started out with in the PICU). We will leave the g-tube in place and start feeding though the NJ to see if it makes any difference. If he tolerates it well, then we know the stomach is the problem (reflux or not empying) and we could convert the g-tube (directly into his stomach) to go to a GJ- tube (a tube that would go from the stomach to the intestines). If bypassing his stomach doesn't make a difference then we have bigger problems (like the intestines may not be working right).
I have a theory on this whole gut issue but I haven't verified it with the doc's so I may be dreaming but here it is. We were explained the "storming" as a automatic fight/flight response (like when you encounter a very stressful situation-adrenaline release) where your heart rate, blood pressure and breathing all increase, you sweat to cool the body to prepare for flight, and your body stops digesting. We have been thinking that Charlie gets mad/agitated because he his food is not digesting and is full but I'm wondering if it is the other way around and he is not digesting because he is mad/agitiated (storming). It probably doesn't matter either way because it still isn't digesting but they say that the storms will go away eventually so if this is right the stomach problems should go away too.