We have entered the 15th day of hospitalization today and we are more than ready to come home. At the same time we are a little nervous about a few things considering we have not solved the problem. We still do not and apparently will not get a solid answer on why it is taking 4 weeks ( February 17th) to have the Nissen surgery done. It means another hospitalization and even worse, the potential for ending up back in the hospital prior to the surgery. Granted the Jejunal feeds should pose less risk for the reflux aspirations that seem to cause Elias' respiratory distress, but while he was fed this way last week while preparing for the PH probe study there was still some respiratory issue, but it was manageable with intense therapies. They are beginning to wean those therapy doses which worries us just a little. We have spoken our mind, of course, but they have reasons to retaliate every time. I think the biggest issue we have right now is we do not believe that Pulmonology is aware of the results of the PH probe. Our pulmonologist is now "off service" and another one has taken over those duties, but has not been in to evaluate Elias. This is a drawback to going to a learning hospital. What this means is that while they are "on service" they have extra obligation to inpatient consults in addition to their typical clinics and appointments. After speaking with the attending on service for the PICU this weekend, who is the head of pediatric medicine as well, he was slightly frustrated that he has not had communication with the pulmonologist as well. I expressed my opinion about the on service obligation vs a doctors patient that has been admitted. Our specialist regardless of service should be seeing Elias or at least be very aware of his presence in the hospital. Bottom line is that no one from pulmonology has seen Elias since Tuesday morning, prior to the PH study. So we are back in the hands of the PICU who unfortunately has the same attending on service that rushed us home the last time and refused to consult pulmonology beginning tomorrow. She rounded yesterday with the current doctors and the plan is apparently to also wean him off the Prelone (steroids). This has been when Elias really gets in trouble. I think we are going to have to call Dr. Lasso's office tomorrow morning and speak with her. We just want to know how everyone seems to feel so confident that we can last 4 weeks based on Jejunal feeding without Elias getting in trouble, especially off all the intense therapies and medications he was on while being fed this way that showed "major improvement" in their opinion. He was getting Q2 albuterol (every 2 hours) Q4 adtrovent, twice a day Flovent 4 puffs of 220 mcg as well as chest PT Q2 for 24 hours and then Q4 for 48. We asked them if anyone stopped to think that maybe his improved status had a little to do with the amount of drugs we were pumping into him? Maybe he needs to stay on this until the surgery to make sure things are stable, instead of weaning and sending him home untested. They keep using the "it is not safe to keep him in the hospital much longer, he is going to catch something" line. We completely agree, but the risk is not lowered by going home and turning right around to come back. Besides, when we were up in arms about the RSV babies they were putting in the room with him there was no concern about him catching anything. They kept saying 3 feet and the curtain, 3 feet and the curtain....ahh that magic curtain. The military should really look into using this in their arsenal because it is damn powerful! The goal is to go home and stay there. We are a little disappointed that our doctors have sort of left us hanging without a way to really get answers. With the way things are going right now it looks like we will be potentially going home Tuesday or Wednesday. A lot depends on Elias' G/J tube placement and functionality. It might not work, his surgeon, who is on vacation now and has no clue about this G/J plan, has always said that everything is too compact down there in Elias to the point where it was not a viable option to even work. Granted these discussions were for long term usage, but they are not 100% the placement of his G-tube will be satisfactory enough to place this. Only time will tell, and honestly if it does not work I'm not sure they will know what to do. And if they even hint at sending him home with an NJ, they will be asked if they have any brains at all. The last item that is of concern is that with the February 17 scheduled date, they would like to bring Elias in a few days prior to that, to ensure his respiratory status is stable enough to endure the surgery. This certainly implies that they are not confident they will be sending him home with the ability to remain stable and at his "accepted baseline." There is certainly more to share, but I will end this here. I guess after this stay we are truly struggling with what to do for Elias with future hospitalizations. We are going to have a very serious discussion with his specialist about the poor communication, be it from them or the PICU, as well as the snails pace at which everything moves until the end. We have literally wasted at least 5 days that I can think of where absolutely nothing was accomplished. We take him to that hospital because they are there and if the reason applies we expect them to be the ones seeing him, unless there are circumstances that absolutely prevent that. The care he gets on the unit on the nursing level with few exception is horrible, thus creating the need for us to be there around the clock. If you can not have confidence when he is in the hospital then there is a problem.