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We are still waiting to speak with the cardiac surgeon. I have decided to be patient through today, then I will start pressing. I thought now would be a good time to update the Medicaid and Nursing situation. We finally got Elias Medicaid card in the mail yesterday. I called the case manager to see if we could retro-cover anything. She did not have the information yet. There is a lag between the issue of the card and the letter of approval to enlist service providers. Apparently, they do not expect parents to be on top of their game and start making calls so quickly. Not us , we do not play around, we have been waiting for this card for three months now. We need to get this ball rolling so that we can start to afford all these new medical bills that are rolling in. She did explain that under the program we have been approved we only get 50 hours of nursing every six months. The program we would need to be a part of is for medically fragile children. We have received spotty and inconsistent information on this program up to know and it is not becoming much clearer. What is crystal clear is that he case manager was not optimistic about things. She told us that we would clearly qualify and that is not an issue. What is problematic is that out of five agencies that could facilitate care four of them have refused to accept Elias. The fifth one has agreed to take Elias on as a client, but there is not a guarantee they will have anyone to staff the case. Apparently this program is very limited in its nursing and without knowing much about our new state’s system, based on our previous experience I would be willing to bet it has to do with a lower rate of pay these cases receive. So at this point we are waiting to talk to the agency directly about this to find out how all this truly impacts us, positive or negative. Unfortunately, while we have received the Medicaid card itself, the state is lagging behind issuing letters of authorization to begin services. That seems sort of like getting your drivers licenses before you take the driving test. Oh it is so great to be battling the state again! We will keep you posted on how this plays out.