Insurance is one thing I had not mentioned earlier, because it in its self is a major topic (excuse me, headache!!). Don’t get me wrong, I’m very grateful that we had insurance. The hassles one has to go through are nothing short of exhausting. The hours I’ve spent on the telephone arguing over whether or not they will pay are unreal. It was time well spent, however; ninety-nine percent of the time, perseverance does pay off. Just make sure to keep notes on who and when you talk to along with the results of your call. Save all your billing receipts and insurance claim documents believe me you will need them to refer back to. Build yourself a paper trail; I did and had to refer to it numerous times. The ultimate goal is to make sure insurance pays everything it‘s supposed to. I never accepted their answer "No, claim denied" as the last word. You will find they automatically deny a lot of claims, it seems, without even having reviewed them. So if you accept their first denial and pay the bill you could be paying for something in a lot of cases that insurance should have covered. Don’t be afraid to challenge the insurance companies.

A great case in point occurred today. We are now about three years post surgery; just today we got a bill from the Neurosurgeon, Dr. F out of the blue. I had to pull my back records and find out what I could about the bill. I knew it wasn’t going to be a problem to track it down, because I knew I had my paper trail. Sure enough it was a valid invoice.

Insurance problems are universal; we’ve had several different insurance companies over the twenty years since Amie was born and none have proven to be any better than the others are. If you find you’re having difficulty, one person who may be able to help you is your employer where your insurance coverage is through. Usually there is someone within the company who handles all insurance problems; they should know whom to contact or what your next recourse could be. Don’t ignore the problem either, thinking it will go away, or that the Doctors office will handle it. They won’t, it is your responsibility, to make sure insurance was billed and that they were billed correctly. This is especially true of hospital statements. I can’t tell you how many times after checking over their invoices that I’ve found they didn’t do it correct. Mistakes cost money, and usually they’re not in your favor; that’s why it is very important to go over each and every item line by line. Let’s face it if you went to the hospital for a cleft palate repair, it would seem funny if you had a liver biopsy on your bill wouldn’t it?

Though these next two incidents aren’t technically insurance related problems, but they help to make a point about taking care of your own. Way back, during where I was talking about Amie’s second cleft repair when she was four years, I mentioned more on that later. This is later. When Amie first developed the rash, she had a very rough night after surgery; Don and I were finally able to get her to sleep about one o’clock that afternoon. The Plastic Surgeon, Dr. F had been in and ordered blood work done but said wait until after she woke up to do it, around three o’clock. We had decided since she was finally asleep to go down to the cafeteria for a bite of lunch, but before leaving we instructed the nurse that the lab tech was NOT to wake Amie for blood work, plus we wanted to be there when it was done. We all agreed that Amie could sleep at least to three o’clock before we would wake her to do the blood draw. Don and I went ahead to lunch but after only about forty minutes I told Don I had an uneasy feeling and felt we needed to go back, which we did. When we arrived, the lab tech was just getting ready to draw Amie’s blood. Poor Amie was crying her eyes out. Well you’ve heard of the Wrath of GOD. You’ve never seen the Wrath of KAREN. That nurse and lab tech, I don’t think to this day know what hit them. My point here is you, as the parents, are in complete control ALWAYS. There are going to be nurses and Doctors too for that matter, that think that they’re controlling the situation. That is simply not true. The parent always has the final word. Don’t ever let anyone tell you differently.

Another time that Amie recently reminded me of happened in her last surgery. After thirteen hours of surgery Amie was to be in the ICU for a couple of days. Mind you she cannot hear without her hearing aid on; but she could not wear her hearing aid because her head was so swollen it wouldn’t fit over her head. Plus unbeknownst to us, her eyes that looked like they were swollen shut were actually sutured shut. So here Amie is blind and practically deaf and people are jerking her around and she doesn’t know what’s going on. They know she is hard of hearing, but have they made any effort to tell or explain to her what they’re doing? NO. Naturally she wasn’t very cooperative, and they couldn’t understand why. We arrived to a struggle. In steps Don and by holding Amie’s hearing aid up to her head, Don was able to explain that all they wanted was to do was to take a x-ray of her chest. Instant cooperation! These supposedly were medical professionals, they know they need to explain things to people when doing any procedure on them. In this case though it seems it was too much effort for the nurse or x-ray technician to speak very loudly to Amie or to hold her hearing aid for her so she could understand what was going on and why. She was reacting completely out of fear. From that point on until Amie had vision one of us stayed with her at all times, even during report (shift change) which nurses objected to, but it didn’t take them long to realize they were up against a brick wall and brick walls aren’t easily moved.

Actually since Amie was in the hospital in San Francisco at 9 years old, we have never left her alone at night, Don stayed at night with her and I would be there all day. We had thought this time that the first night out of surgery in ICU that Amie would have been well taken care of since they knew about her eyes being closed and her knew of her hearing problem; after all they’ve done this before, things would be OK. Don’t ever assume that the Doctor will tell the nurses everything they need to know. Ask questions and make sure they fully understand your child’s needs. It will make for a more comfortable hospital stay for your child in the long run. No one knows yours child’s needs better than you do.

Now-a-days a lot of hospitals actually encourage a parent to sleep over. Most hospitals today are faced with nursing shortages, they have found having a parent there overnight works to their staff’s advantage and the child is much more comfortable knowing Mom or Dad is close by. In ICU cases you might not be able to sleep right in the same room with your child but usually they have a room on the unit close by and if your child needs you they will come and get you. If it isn’t openly offered to you, don’t be afraid to ask about it.

I’ve sited these two instances so you could see why it is so important to be your child’s advocate. The nurses and the Doctors while most of the time might think they’re doing what’s best for your child, YOU, ultimately have the final word. Don’t be afraid to stand up for your child’s or your rights.