So instead of Sam staying until Friday, the doctors released him around noon on Wednesday. We came home with syringes and vials, which I mentioned earlier. It was awful. The needles were so long that we had to push them in at a 45 degree angle just to continue to hit fat in Sam's leg. We dreaded the shots but were getting better checking blood sugars which only requires a finger prick. Sam adjusted quickly to those.
Andrew went to see a pediatric neurologist at Duke within a week after that. They worked him in, and the doctor we saw treated us like an unimportant work-in. I was not in a mood to take his ugliness. He also barely looked at us, told us that medication was not working, AND told us that Andrew probably needed brain surgery to get any better. It was devastating. Meanwhile, my mom had Sam in the lobby trying to figure out what in the world to give him to drink. It was an awful, miserable trip. And I was just about beside myself.
We came home and decided to never go back to that doctor again. Andrew did better, and we have an emergency medicine to give him when he has seizures. It is still hard and scary, but the medicine helps more than it doesn't help sometimes. Andrew used to have little seizures a couple of times a year at the most. His face twitched, and he got stiff; but he never stopped breathing. These seizures were different, and they were awful and scary. I thought the old ones were bad, but I would take them back as fast as I could given the choice.
Sam started back to preschool a few weeks later. I went back to work part-time. Someone had taken my Nashville trip, and life in the Admissions world went on fine without me.
I only worked part-time, because I went to school to check Sam before lunch and stayed to count his carbs and give him an insulin shot. We would go into the bathroom, but it was still so traumatic for both of us that we ended up going home most days to do it.
All of that changed several weeks later when we went to the endocrinologist in Charlotte for the first time. When he saw me, he hugged me. He gave us more information and asked if I wanted a pen. He showed me the pen, and I could not even believe how easy it was and how short the needle is! They are nano needles! We still kept his 24 hour Lantus with a syringe for over a year. But the other shots are all now given with a pen. Sam had his first insulin shot with a pen at lunch at South Park Mall. We were in the bathroom, and he did not even cry. We were both so happy to have the pen.
I continued to go to school for lunch every day through kindergarten. Will had started checking Sam before lunch which helped a lot and saved me a lot of time each day. But the schedule took its toll. I resigned from my job when I was fortunate enough to find a part-time job at our pediatrics office. God's hand was in all of that.
Sam continued to do better. And we have continued to learn. And we have had to learn more than the medical side. We have had to learn to ask for help at church or school or wherever Sam goes. He can only go to one house for a sleepover without us - my sister's house because my niece learned early on how to give shots. In fact, we took Andrew to a new doctor when Sam had an eye appointment. And my sister, friend, and niece went with me. My sister went with Andrew and me (anticipating some bad news), so my friend and niece took Sam to his eye doctor.
Andrew's issues took a big turn in February of 2011. We found out his immune system was hardly working. That meant lots of tests. Lots of frustrating and scary news. And weekly infusions.
We have also learned how to try to get what we need. We have learned that our insurance company does not understand, nor do they care about people with severe immune system problems, seizures, or diabetics (mainly test strips which are very expensive). I have waged many battles with them - that they started. I could not just sit and not get what they needed. And it was eventually covered, so it should have been early on - before it wore on me emotionally and physically. I have talked to the Insurance Commissioner's Office, some top people at my insurance company, AND the Attorney General's Office. I felt so alone during that time. Pete listened, and I had a friend who helped more than I could ever have imagined; but it was a battle full of frustration that no one would listen.
They ruined the graduation of my first child because of the battle and stress. And they turned me into someone who could think of little else during the time I was fighting the biggest battle. I know I almost drove everyone around me crazy. We finally were able to get the test strips we could prove they owed. And then I dropped it. I had to. But that was not to be the end of our battles!
Occasionally, they still pop up and deny things - only to fix them soon after. But before they fix it, Andrew will have a seizure because we cut back his seizure meds to make them last longer until the next refill was approved. One night, I called a number and had them put a note in their system that Andrew had a seizure on his way to the starting line of an indoor race. It was during the time I was battling for a seizure med that they said I needed to pay over $800 for in one month. I had told them if something happened to him during that time that I would take action. Soon after, the meds were approved, as they should have been initially. I prayed through the whole process and understand the frustration of not getting what is covered, because I have lived it different times with two different children. My insurance company had hung up on my doctor's office. They were vague about paperwork they needed. One doctor said he had never had to do so much paperwork for his other patients!
Then this past December, we ran into a new road block. With the new healthcare stuff coming, I tried to be ready, but the ball was dropped; and Andrew went a few weeks without a crucial medicine.
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