Tuesday, January 4, 2011

New Year, New BS

Its been so long since I've had the time to sit and update this blog, but at long last, here I am. I had great intentions this afternoon. The cleaning ladies came this morning so I figured that once I put the kids down for a nap I could make myself a cup of coffee and relax for the hour or so that they're all quite (or at least otherwise contained). Then at 11am the phone rang. It was a health advocate with our new insurance asking if there was anything they could assist with. Great timing! I was meaning to get on the phone to start sorting out all of the mess that a change in insurance would surely bring. She was useless, as was the woman she transferred me to. Five hours later (that's right, FIVE) things are still unresolved. They want me to use their mail order pharmacy but I want to use the CF Services Pharmacy because, HELLO, its FREE. Drew's secondary insurance coverage from the state of Ohio (BCMH) picks up the co-pays, and let me just tell you that the co-pays on A TON OF MEDICATION is A TON OF MONEY, so its a big relief. But round and round we went, on the phone with dozens of different people, some not understanding what I was asking (though I don't exactly know how I could have been more clear) and some frankly just not caring; they weren't budging. I finally (read: at 4pm after spending FIVE HOURS ON THE PHONE) was able to get a fax number where I could submit an appeal and ask for an exception to be made. The lovely woman who finally broke the code of silence and gave me the number more or less assured me that my appeal would never go through, but wished me the best. We'll see.

So that's how I spent this afternoon. I suppose in lots of ways it was better than how I had spent many of the last few weeks with endless breathing treatments and airway clearance trying to keep Drew breathing well and at home vs. in the hospital. We did it! We kept him home! He was a pretty sick little dude for just about 2 weeks. He was "sleeping" with us, coughing all night long, and working so hard for every breath. I told the doctors that from my perspective there were 4 things that he needed to get better: rest, good nutrition, airway clearance, and antibiotics. At home he was getting all 4 of those, and they agreed. There was nothing different that they would have done in the hospital, other than monitor his breathing around the clock (and trust me, I was already on it.) It wasn't fun, but with two courses of steroids and two different courses of antibiotics I (knock on wood) think we are healed. The antibiotics end tomorrow and it will be the first time in almost 10 weeks that he won't be on antibiotics. In just 8 days we will also celebrate having been hospital free for three whole months! I know it doesn't seem like much, but its the longest stretch of time that our family has spent at home together since the twins arrived, so its kind of a big deal to me.

We have another bronchoscopy scheduled for the beginning of February. I might as well just bend over because I'm certain that insurance will be a pain in my ass about that too, deeming it "not medically necessary" or something ridiculous. I'll try to be positive. The purpose of this bronch is to see if there has been any change in the way his airways look. They are expecting things to either look the same or better. The malacia should start to go away sometime in the next year which would be a huge win for us. We're not sure if his "weird" airways are going to remain weird looking or what effect they really have on his ability to clear secretions. Its really just going to give his doctors the chance to see what's down there, structurally, so that they know what they're dealing with if he gets sick again. They all think that this past couple of weeks was really just nothing more than a cold like everyone else in our family had, but that between his extra thick mucus, floppy airways from malacia and abnormal shaped lungs, its really hard for him to fight even the smallest of infections; his airways just can't handle it. Things were not good. I hope we don't have to do that again.

I cannot believe that they twins are almost 10 months old. Seriously, where did the year go! I'm going to have a mini-celebration for their birthdays, mostly with family, but I want to keep it small. Its almost time to start planning for Great Strides again. Last year our team raised over $10,000, and that was in just 1 month. The twins were born in March. I learned what Great Strides was in April. And in May we all walked. It was absolutely incredible, and this year I hope to blow that number out of the water.

That's all the time and thought that I have to offer right now. I hope that everyone had a wonderful Christmas - we sure did. Stay tuned for the compelling conclusion of Erin vs. Big Insurance - its sure to be good!

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