I haven't written about my daughter in a long time and I thought I would update you all on her condition and how we are trying to stay on top of things.
Wilson's Disease, as many of you already know, is usually not diagnosed until the person is sick or has some acute liver problem. My daughter is an enigma of sorts and so doctors really don't know how to treat her. The biggest thing right now is that we are monitoring her and making sure to keep a close eye on her copper excretion. The way we do this is by doing 24-hour urine copper testing. Basically, they give you this huge jug and you have to collect ALL the urine that comes out of her body in a 24 hour period and place it inside the jug and keep it either on ice or in the fridge. The biggest challenge for us is catching her before she pees in the toilet. It's so easy to do. She's only five and when she has to go... she has to go. One thing I figured out to do was to place a potty-training seat on top of the toilet. That way if she forgets then it will remind her. We got the kind that just snaps on top of the regular toilet seat and has like a cup. I just pull the cup out and pour the urine into the jug. It's the perfect solution. (I recommend this to anyone who has to collect urine for a girl.... much easier than the little cup they give you.)
Her next appointment at the Children's Hospital is in January. They will take her blood and do the liver enzyme testing. That is so scary for me. I have to admit that at times I forget that she has Wilson's. It's not until I have to see those liver enzyme tests that it reminds me. Her liver enzymes were elevated last time they did them. They didn't make an issue of it when we last saw them, so I didn't think to look at them thoroughly. However, upon closer inspection I realized that some of the enzymes were double what they are supposed to be. Being a Medical Technologist is a double edged sword. It gives me the laboratory knowledge to understand the results of the testing.... However, it also means that I am aware of what those results mean. You know what they say... ignorance is bliss. Sometimes I wish I didn't know so much.
My battle with the insurance company has finally been resolved with my daughter. I am still working on the rest of the family though. The genetic testing cost approximately $2700.00 per person. Needless to say, the insurance company did not make it easy for us. First, they claimed it wasn't medically necessary. I was soooo upset about that! They asked for medical records and a statement from the doctor stating why the test was ordered. I was worried about future tests, so I asked her doctor to make sure she explained in no uncertain terms how necessary this testing was. She wrote the best letter for us and I hope that it covers any future testing we might have to do.
The next issue we had to deal with was the billing. They processed it all wrong and I had to straighten it out. They were submitting it and resubmitting it, and it began to look like they were trying to bill us twice for the same testing. Of course, the insurance company questioned it and had to go through the entire process again. In other words, we were fine and covered and then all of a sudden it was rejected again. UGH!! What a nightmare!
Right now I am waiting to hear from the hospital about the rest of our family. According to the insurance people they paid already and had other payments sent in early December, and we only owed a couple hundred dollars total. However, the hospital explained to me that they had not received any payments since October. Who is telling the truth? Who knows? I would bet on the hospital because they definitely want to get their money and the insurance company will do whatever they can to NOT pay for services. I am convinced that insurance companies are pure evil! We have private insurance and have been paying a hefty bill each month for years. Now that it's time to collect they are playing this game with us. It's not fair and not right.
My advice to those of you who have medical bills like us is to make sure you keep all insurance and testing documentation. I am sure glad I did! Also, make sure to log your phone calls. That is another thing that kills me.... the amount of time I have spent on the phone on hold or talking to others trying to resolve this has been unreal. Now they have a system at the hospital where you have to push "1" to continue to hold. That means you can't put the phone down for a second. You have to put your life on hold. The voice-activated ones are worse! Try speaking to a computer when you've got screaming kids in the background... it's nearly impossible! Of course, my kids have a phone radar. They know when I am on the phone and immediately their volume goes up by 300%.
I will update you all on how my daughter is doing after her January appointment. All we can do right now is pray that we are doing the right thing. It's basically in the Lord's hands right now, so I can't stress about something I have no control over. She is such a sweet spirit and warms the heart of everyone she comes in contact with. I know she's got a greater purpose on this earth. She's definitely a leader and a friend to everyone she knows. I can only imagine the woman she will one day become.
*************************************
I wish you all a very Merry Christmas
and a Happy New Year!! May 2009 bring
you peace, joy, and prosperity.
*************************************
No comments:
Post a Comment