This was another one of those days that really makes me wonder about our healthcare system. The day started with me needing to get Morgan an appointment with her GI doctor. She was originally seen over an hour from our house. However, the group has an office about 15 minutes from our house. The original office had said we could transfer there with no problem. So, I called. They said that they would have to get her PAPER chart to the office first before they could make an appointment so there would be no way that she could be seen this week. WHAT? Coming from someone who does electronic medical records for a living, this was just frightening. First of all, forget EMR's for a minute. Haven't they ever heard of a FAX machine? Secondly, the part that was the most pitiful to me is that if she was a NEW patient, she could have gotten an appointment. Third, our health care system had better hope that it doesn't change because customer service like this will not work in a consumer-driven market. I relunctanlty agreed to go for the hour drive just to get her seen. Sigh.
Then, the home health agency finally found a nurse who could come do Morgan's home infusion. She is coming at 3:15, Victory. At 3:05, we receive a call saying that they had contracted the nursing portion out to another agency and they just found out that they aren't licensed in our county. Really? They say they are still working on a new solution and will let us know. At 4:45, they call to say tha the nurse should be heading our way in 2 - 4 hours. Nice. Around 7:30, he shows up. For an HOUR, he tries to stick Morgan. Misses twice. For the third time, he gets an ULTRASOUND machine and brings it in our house. He tries to stick Morgan using that as an aid. He still misses. He injects lidocaine so that she won't feel it. Oh man. He tries for what seemed like forever. Finally, he gave up. He then starts mumbling about a midline and says he is calling "someone more experienced." Oh my. It took every bit of my strength to not grab the needle from his hands to poke him in the eyes. The new nurse showed at a little before 10 (this is PM). She sticks Morgan ONE time and has it in . We hook up her med and away we go. Poor girl. She had a rough day of it. However, this was her 6th day of school in a row (counting Thursday because she would have gone if they had school).
Here's to finding a cure for Dermatomyositis so that she doesn't have to go through this treatment drama. If you would like to sponsor our team who is running and walking for a cure on December 19th, please go to http://www.firstgiving.com/curejmformorgan.