** This post is just my opinion based on my experiences and I know others have different view points based on their opinions. I just needed to get my thoughts out.
Medically Ethan has been doing really well, and we had not had a bleed in about 3 months. We have been so fortunate to have a wonderful team of physician’s that KNOWS hemophilia, they specialize in it and that knowledge helps him to lead a more normal healthy life. Some days it is so easy to forget he has hemophilia, others not so much. It only takes one little, minor thing to remind us. What was it this time? Honestly we don’t know (the ER doctor loved that one). It was just a small series of bumps that would have not even left a mark on you and I. Hemophilia is really a manageable medical condition. By the time most children with hemophilia are Ethan’s age they either have a port (a permanent IV line on their chest) or their parents have been trained and can administer the drug intravenously to the child. Ethan is not like that at all. He is what his nurses call an “Anesthesia start,” basically 9 out of 10 times it takes an anesthesiologist to start his IV line, I have watched many nurses become humbled by my toddler. As much as one can get used to seeing their kid get a hematoma I have, my real struggle is making the doctors and nurses understand why I come in to the ER with him. During the week 9-5 we can take him to his team of specialist, but nights and weekends we trek into the ER. It is always a struggle; doctors always want to over treat him (give him Ct scans and things that are not necessary and I understand they are just doing what they need to do to cover themselves in a very litigious society). ER doctor’s don’t understand his hemophilia in it’s entirety (and that is not their fault, again they are just doing there job) They don’t get why us, his parents, and his hematologist have not gotten him a port and why I don’t give him shots at home and they like to give their 2 cents on the matter after seeing Ethan for about 5 minutes over his hematologist who has been with him since he was one. Again not their fault, hemophilia is so rare that most doctors don’t know the standard of care for a hemophiliac and as Ethan’s parents it is our job to inform them and sometimes it can be quite the battle to get them to understand.
This brings me to the main thing that has been running through my mind since the hospital visit last Sunday, the healthcare reform bill. It has been on my mind so much lately. Last summer I even download some of the draft versions and started reading them. While it presents some appealing things (like getting rid of “the preexisting condition” and so far it looks like there is no lifetime caps) there are so many things that scare me about it. Chris and I work so hard to provide insurance for our son and are so grateful that we can do that. I don’t want my fellow taxpayers to pay for his medical needs. Do we really want to government in our medical records? Do we really want public/socialized medicine? Can we afford more taxes? And the bill is even looking at getting rid of special funding for specific disabilities and taking a public health care approach. Meaning the Hemophilia treatment center, at San Diego Children’s Hospital would not get full funding since they are specializing in certain disabilities (blood disorders, not just hemophilia). Instead of E being able to see a hematologist who specializes in blood clotting disorders and knows him, he would go to whatever public health care hematologist was out there. I have met lots of them and again I go back to my experience at the hospital, they just don’t have the experience with hemophiliacs to given them the proper and most efficient medical treatment. So our ER experience would be our ever experience with him and hemophilia.
It is just my opinion, but I don’t think a one-size fits all healthcare plan will work for my family and me and feel like we had no say. I hope that I am wrong about how some it will play out but I really do want to know, where has democracy gone?