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Thursday, August 27, 2009

Tampa Trib Article

I just added the Tampa Trib/TBO article that ran yesterday. While it is okay, it is inaccurate in some of the items - such as overnight nursing only being needed and the cost @ 300,000. The need is 24 hrs and @ 24 hours/365 days a year it is 300,000 + and for 12 hours per day/365 days a year it is 150,000 +. Some people were brutal in posting comments but I do realize that this is an article, not the whole story and not all that Megan is. Megan has not always been like this and if not for medical side effects, some screw ups she would not be in this position. On the other hand, these devices have also saved her life from dying from the medical mishaps. Yes - she has a genetic metabolic, nuerological disease. Her seizures are bad - there have been too many physcians who are much too passive and ALLOWED her seizures to escalate while experimenting with medications to try and fix them. Most write these kids off and dont try hard enough. Parents with children like Megan understand that there are some things that can help and unless you scratch and fight it does not happen. Our point was to be that there are children less severely affected than Megan, who receive "free nursing" because they qualify financially. Because we are not indogent we dont qualify. Our private insurance does not cover. I cant buy the coverage, or else I would!!! Believe me, I would! Why does the child from the family that is indogent deserve a better quality than my daughter - the daughter of a family who helps to provide for the indogent family. They get to sleep because they have a nurse. Then in the morning they get to get up and do whatever - because a new nurse comes. I do not want someone else to "take care" of my child. I am on it - but I do need to sleep so that I am able to . I also need to be able to wean her from this ventilator which will require supervision so she can have a better quality of life. That is the goal here - it is not to torture her. And she does know she is loved, and she does love us.


Colleen said...

You know I always thought that every state had some sort of program like my state...where they can get the state insurance based on a disability that needs so much care like Megan. I realize how fortunate we are here in WI to have this...not that families dont have to fight for care...but here she would qualify. I hope the Senator gets things moving and you guys find some way to get the help needed. The article really puts into perspective all the stress your family feels.

Anonymous said...

You are great parents! I can't even imagine the heartbreak you are going through. Stay strong and continue to love and care for Megan. You and your precious little Angel are in my prayers.