Hi guys! So lots to report today. Ill start with the happy. Yasenia lost not one, but two teeth today! Pictures to follow tomorrow because the kids are already in bed. At least all of the kids except Niko. :-) I called Yasenias new school (which is Alexias current school) to ask about her teacher. I spoke to both of the assistant principals and one of them said that she would have the teacher call me because she wanted who it was to be a surprise. I asked if it was a teacher that she thought would be good with Yasenia. The assistant principal said that this teacher would be exceptional and that she was hand picked for our Banana. When she said that I knew who it was. By law during and IEP (Indivi. Education Plan for children with different needs) the school is required to have a teacher from the same grade level the child is going into. We looked into public school last year for Yasenia before deciding that she wasnt ready. The teacher that was in the IEP last year is going to be her new teacher. And her and Danika get to be in the same class. We could not have picked a better teacher ourselves. She is very kind to Yasenia and is more then happy to find a way to include her in everything in the classroom. We have a meeting with her next Friday, but her teacher will already be way more knowledgeable then someone who wasnt in that first meeting. Unto the bad news. I made no less then 20 phone calls to various parts of the hospital. All the way up to the top (who I still havent heard anything back from). Basically everyone is telling me to talk to someone else. Then I finally got a call at 5pm saying that they had spoken to this specific Dr and that he said I have to call his specific department to ask for permission to cover the surgery. I laughed. And then I all out lost my ever loving mind. I am so tired of hearing we know he was wrong, but there is nothing we can do. Im calling BS. There are several things that could be done. They choose not to. I said it before and I will say it again. It is a system that it broken. It is a system that favors the Dr over the victim. I explained to the supervisor on the phone (yelled it basically) that I have watched my child have surgery after surgery after surgery because her surgeon screwed up and now I have to call and get his permission?! I also explained that his office was going to tell me to screw off because they think he can walk on water. Her response? Yeah, they might do that. Awesome. Just awesome. It baffles my mind. It is a concept that a child could understand and yet numerous grown ups seem to have a problem. She told me this at 5pm when buisness was already closed and there was no one even there for me to talk to. Even though Nikkai leaves tomorrow for UNC. If I cant get the hospital to break and cover this .......I just dont know anymore. I informed the woman on the phone that the harder they make this the uglier it will get. I will go to every news station, every person who will stand still and listen long enough to get my child the help she deserves. After I got off the phone I bawled. I just dont understand why every single thing has to be such a fight. Every. Single. Thing. Then I did what any normal person would have done. I told Nikkai we were going to get the kids snow cones for dinner. And we did. I needed a reminder that we would be ok. I needed to hear the kids laugh and remember that I am strong enough to do this again tomorrow. After all when would you stop? Never. People have asked recently why dont we just switch hospitals. I think its a logical question. The answer is that its not that simple. First off we have looked. Trust me when I say that. We have been to three hospitals within our state including a specialty clinic. We have seen Drs in Charlotte and a few years ago Nikkai took Yasenia to a specialist in Chicago who also couldnt help her. I have spoken to Drs in NY, CA, FL and GA all with no success. The reality of it is that Yasenia is very complicated. Her jaw has been rebuilt over and over again over the years. Her current surgeon is doing the absolute best he can with what he has. He is essentially trying pretty desperately to clean up someone elses mess and for that my hat is off to him. Then there are the nurses. They are amazing. They make us feel like family. I can take Yasenia to the hospital and request who I want to be with her. Who gets to do that? I can call her anesthesiologist and tell her we are coming. If it is her day off she will find someone just as good and make sure Yasenia is taken care of. The reality of it is that I am looking for perfection in another hospital. I still havent found it.
Posted on: Wed, 06 Aug 2014 00:37:01 +0000
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