Wednesday, April 29, 2009

The week so far

Sunday brought Grandma M to town for a quick visit until Tuesday morning. Elias had a great time playing and getting love from her. We do have a few photos to share as soon as I have a little time to sort through them and post. Hopefully tomorrow that will happen.

Yesterday, we had a supervisor visit from the nursing agency, and honestly she was about as intelligent as her counterparts. She was out to conduct an audit of Elias book where the nurses log their notes and medicine sheets along with other required paperwork. We asked her when we were getting a new care plan since the one in the book actually expired mid-February and is no longer accurate since things have changed. We have been inquiring about this now for over a month with little attention being given to our request. While the supervisor was out I took the opportunity to pin her down about it, stating how it has actually caused confusion and mistakes. Her response was simply, “The nurses should not be looking at the care plan, but rather the doctor orders and medicine logs. It really is not that important.” Oh really? If that is true then why is it in the book on the first place and more importantly why is there an expiration date? She had no response to that. All I know is they are being audited by the state next month and I am in possession of some items they might need to pass if Elias case is selected for review. It should be interesting considering the carelessness they have demonstrated the last several months.

To round out our busy day we had two second year medical students come out to the house. We are part of a volunteer program that has the students come out for an afternoon to homes with complex medical needs, like Elias. They shadow us and observe how we care for Elias and of course interview us in great detail about our experiences. It is designed to help them get a first hand experience into what it is like to have a child like this. It was a very wonderful experience for all of us. We had a great time bragging about Elias and sharing our thoughts and they really learned a lot. Hopefully, this will help them as they become doctors. They loved Elias and thought he was adorable. He of course was his normal flirting self as they were both female. Hopefully more schools of medicine will adopt this type of program to help them understand what life is like as they make decisions. We will certainly do it again if the opportunity arises.

So far today we have had physical therapy, which was a bust because Elias was very upset and fussy. We later figured out that it is because his ostomy site is so raw from multiple bag changes the last few days. Poor fellow he is miserable. If we can get the bag to last at least 24 hours it should feel better to him. The rest of the week is going to be a little relaxed. We do have Occupational therapy on Friday, Grandma O will be here and of course there is Elias birthday!!

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