I would have loved to entitle this update differently (inserting the word meaning female dog), but this is a family blog with standards that exceed reducing to careless and potentially childish values. Today was another fine tangible illustration of the point I was making on Monday to the “team.” The PICU team was overstepping their boundaries again attempting to call the shots about his discharge. I guess there has not been enough time to pass along the information to the rest of the PICU attending staff, or maybe there is just no real desire for effort, except from the director of pediatric medicine. Whatever the reason it boggles our mind that this kind of disorganization continues to be exposed, especially to someone that has brought it to their attention. So today during rounds by the PICU doctors, it was said that Elias would be discharged tomorrow. Now yesterday the surgery team decided Friday would be the day. We made plans accordingly for Katharine’s work schedule to accommodate this plan, but today the nurse told us that it was indeed tomorrow as long as the discharge coordinator could get everything worked out with the nursing and so forth. Having learned to trust our gut feeling and knowing what we know about the way some of these PICU doctors seem to operate, we suspected this plan was not communicated across the board. Our suspicions were confirmed when his surgeon came in to check on Elias. We told him what we knew and he told us he had no knowledge of this, but would take care of it, as usual, and that it would be Friday. It is certainly not that we want to be here any longer than we have too, but the process to get him home and the coordination of schedules is not able to occur with the snap of the fingers. Plus it is the principle that again the PICU doctors trying to take control of a multidiscipline case, making decisions without consultation or communication, and complete disregard for including us in the process even though we specifically made that fact known. To make matters even more complicated and more discouraging, we found out that the discharge coordinator was unaware of this also…at 3 pm!! AMAZING!! You would think that after five weeks here and a meeting expressing and exposing issues it would be a little better organized, regardless, Friday is the day we will go home, unless Elias does something completely crazy. Bottom line is that we should have never been told about the plan to discharge tomorrow, but I am starting to think they want the glory for the decisions and the results. Unfortunately, every time they have done so, they have ended up with egg on their face, yet they do not seem to get that.
So does this mean Elias is completely better? While we would love to say yes, we unfortunately can not do so. There is still a secretion issue, but not so bad that it requires him to be hospitalized. It is ironic that this issue exist, because the Nissen was suppose to help reduce this problem, in theory. We do not think that we did the Nissen unnecessarily, it is just ironic that what was keeping here the last few days was a secretion issue. Having the Nissen should indeed help get a better illustration of what is going on and isolating the problem. This should make management from home slightly easier and the need for further hospitalization potentially eliminated. Only time will tell unfortunately, as always hurry up and wait. At this point, we are simply ready to be home. There is that part of us that is concerned about having to come back again soon for this issue, but with all the issues, blunders, and idiocy, we need a break and will just pray that we will be able to manage everything from home.