Of course the one day out of the twenty that one of us is not at the hospital around the clock, because I caught a stupid cold, and all hell breaks loose leading us into the weekend and the inability to get to the root of the problem. A few days ago the attending was hell bent on getting Elias home on Friday regardless of the surgery outcome potential for this Wednesday. When I explained that there was more to discharge than the snap of the fingers with him, I really felt like I needed to speak with the discharge coordinator about the logistics with home nursing and the potential to be re-hospitalized after 3 days. The doctor rolled her eyes and commented. "yes, that always gets in the way." I did not get to discuss anything with the discharge coordinator until the following day, but did understand she had spoken with the attending. They could send us home on the 10 hours a night, but would have to appropriate more time to get the hours increased, per doctor recommendation. A letter had been written and signed by the resident caring for Elias for this admission, but not written by her. This is apparently common practice. From what we have gathered from the Nursing agency the letter, which I have not seen a copy of, was sent yesterday or today to the state for review. Once review begins it must be approved or denied by the end of the business day. The question is why was this sent in so early? This would be part of the discharge process, not pre-approval. Elias is at least a week from discharge, but like 10 days according to the surgeons recovery estimation. His needs could change and require much more care, god forbid, but the possibility exists. Once you submit a request for increase hours once it is denied you can not submit another request for 30 days, regardless of medical necessity. So why would we push this through early? Everyone is pointing fingers, giving excuses and making random theories. From what we can tell is that there was a discussion about pushing the issue with the state in trying to get him home by the weekend by this attending. Then of course Elias took over and ruined everyone's thoughts by having the G/J tube come out. This created the necessity to have the surgery on Wednesday and explains why everyone was so on edge about everything and on the ball. Did not pick up on that until hindsight. This would also explain why I would not get clear answers from people or the fact that people I needed to speak with were mysteriously unavailable. Fortunately, our state case manager for REM stepped in and talked with the nursing department that reviews and at least settled that the timing was an error and to leave it pending review when we have a new discharge date. That was my doing, calling her and telling her what was going on and fortunately she was able to save the day. If that only would have solved the problem though, nothing is that simple. The state informed the agency they were going to deny the request for 2 extra hours a night, claiming Elias does not need them. Who are they to say what my son needs or does not need. A checklist does not constitute evidentiary proof of ones needs. If that were the case then why are so many people telling us they have patients that require less care, less equipment, but have more hours. Proof that the cookie cutter philosophy is not an accurate gauge, but use it when it is convenient to deny. Prior to my case manager becoming involved she told the agency to have the doctor that wrote the letter to call and explain. Problem number one the doctor merely signed the letter, problem number two, she can only report on his status for this hospitalization, not the previous except through opinion via his chart. This was the doomsday call that as our case manager told us, "did you more harm today than anything." While speaking with the state the case manager was informed that the doctor was unable to clarify and actually said she did not know why more hours were being requested. She also told the state he was in for Gastrointestinal issues and not respiratory!!! The state worker also told the nursing agency that we have tried before and were denied, what made us think things were any different. It seems like the parents are just trying to get more hours unnecessarily. First off, we only went forward with trying to get more hours because everyone involved with Elias care, doctors, case workers, nurses, home nurses, social workers, even other parents say we should have more. However, they are apparently unable to articulate the reasons why to substantiate these opinions. Secondly, the doctor that signed the letter, but was unable to speak on our behalf about this, is this not some form of hypocrisy? Is it legal, well not legal, but ethical to arbitrarily sign your name to a document and the completely contradict it. Granted I have not read it, but I was told by the agency it was well spelled out. Needless to say we were told that the doctor basically summed it up enough for the state that we do not need the hours, but would keep it pending, but the changes and needs would have to be profound for approval. So once again over zealousness and the inability to accept our opinion and involvement have caused us more issues than it is worth. While we know it is not true and that are many of you that care and pray for our family there are times when it feels as if it is us against the world. Anything that can cause a problem will and anyone that can contribute to that problem will surely present themselves. The attending we spoke of earlier is the same attending that was on our last hospitalization, refused to consult Pulmonology and wanted to send us home before our surgeon stepped in and went to bat for Elias. These are the kinds of people we can do without. Do they get bonuses for hospital bed turnover? I doubt that because none of the others seem to be that over zealous. Bottom line is we want to be as positive as we can, but it is difficult when you are using a system that does not do enough to keep people from abusing it. Then it becomes so overstretched that it can not full-fill the obligations to those with the greatest needs. The saddest part is no one who has the power to change it cares. It is parents and people like us that try to get them to listen, but we never get our voice heard. Someone else always speaks for us, but there is no sincerity, passion, or true sense of self worth displayed. It is the politics and bureaucracy that are our voice, and they are at the opposite end of the spectrum. So I say this to those who speak for me, walk a mile in my shoes before you criticize, judge, or deny me what my son does or does not need.