The Ball is Rolling

We came to the decision today to get the ball rolling for discharge. It was not an easy decision, but honestly we did not feel like we had much choice. There were several factors that we have been debating over the last few weeks. The first is the obvious. The target date set by the nursing agency is approaching. We feel that if they are staffed, then excellent problem solved, life moves on.   However, if they are not then it could literally be an indefinite amount of time before they are ready.  I mean we can set target dates until we are blue in the face, but without actual leads for that staffing they are mute points. We can not sit here waiting forever. At least by giving them a chance to pull it together, almost a month now, we feel that the decision is made without bias on our part and mentally we have somewhat of a clear conscience. It brings back memories of having to leave Elias in a hospital from our NICU discharge if nursing could not be arranged. The choices and sacrifices we made were for him because a life in a hospital is NOT a life at all. It is also simply getting too expensive to continue to be here just to be waiting. The gas, food, etc. not to mention the hospital bill as he is in Acute care. Elias is showing signs of being restless himself. He has entered an exploration phase and is craving more than these four walls can offer him. The other factor in the decision is that Elias has had three infections while we have been just sitting here waiting. If you recall, how many times did they send us home for three or so days to come right back for surgery in the last three months. The answer is several and the reason: because a hospital is the worst place to be when you are just sitting and waiting. You are bound to catch something. That was a biggie and really helped the process. Another factor is we do everything here anyway, mostly by choice, but other because we have to make up for the complacency of the staff here. They tell us we are such the exception, I have a problem with that. If I’m the exception then why am I treated differently? We can do all the things we do here at home and while the exhaustion level will not be reduced it will certainly be more comfortable. We have spent such little time in our new house in the four months since we have moved here we are still not even unpacked. The final component is the complacency here. Fresh off a 90 minute discussion not even 48 hours ago and already we are experiencing some of the very issues we brought up. This demonstrates the staffs unwillingness to respect the supervising positions by virtually ignoring directives. While that plays a very minor part in the process of making this decision it had to be accounted for. It is unneeded frustration and disappointment. The unfortunate part is that anytime we are admitted here this is where we will go, regardless because this is the only unit for ventilator patients. Unfortunately we have some upcoming surgeries that will require brief stays, but at least they will be just that, brief. I suppose the overall factor is Elias and he as I said seems ready himself. This feels like the right decision, not necessarily the best decision, but again it is a leap of faith. It will certainly not be easy without the proper nursing. It would be much better if what little they had was night time versus day. We are not really sure how we are going to make it, but we have to trust the faith and love we have used to get us this far.