Arg

What She Wore: I'm in my pj's now--purple LSU t-shirt, gray running pants.

Sometimes, dealing with medical personnel is just annoying.

Bino requires his liquids to be thickened. This is because he was ventilated for two weeks following birth, and this killed some of the reflex that protects the lungs when we swallow. Thickening his milk prevents him from aspirating and possibly choking or getting pneumonia. Every kid we knew who left the Cardiac unit needed some type of thickener in their milk.

Since we changed insurance companies, the medical supply company has been telling us that our new company will not cover thickener (this nasty goo called Simply Thick). Now, my benefits packet tells me that it will be covered since we're under doctor's orders to use the stuff (not to mention we're possibly preventing his death or hospitalization here). The Med Rep keeps saying that it's an "additive" and we keep telling her that it's medically necessary. It's as if she's unable to hear the words, "he failed a swallow study." We've told her ad nauseum to just mail us the thickener. If our insurance fails to pay, we'll do so with a smile because we know our son needs it till he's at least six months.



Today, she called to say that she would not be shipping our much needed thickener since our insurance company doesn't cover it.




That sound you hear is me shouting in frustration. Listen carefully, you can hear it: GIVE. ME. THE. THICKENER.

Like an old-fashioned movie: For the love of God, good woman, just give me the thickener.

Like a 1980's drug lord: You got the stuff?

A la Quentin Tarantino: Give me the mutherhuffin stuff! You hear me mutherhuffer?


I have, perhaps, thought about this a bit too much. There was, maybe, too much caffeine with dinner.



Since Elaine valiently went to bat for us, and was shot down--wait, that never happened--Since we are currently without thickener, tomorrow, bright and early, the Hub will be calling up our insurance company trying to figure out what we have to do to get this goo sent out to our house. We will pay out of pocket if necessary--we'd just rather not if it's covered. Meanwhile, we're throwing rice cereal in his bottles which does NOT agree with his little tummy, and praying that we're putting enough in there, so that the stuff doesn't run into his lungs.

Freakin' ridiculous.

I'm a Survivor

What She Wore: Black tee with a satin-trimmed keyhole neckline and three-quarter length sleeves; blue jean capris in a dark wash; some gaudy gold shoes that I am just loving these days.

Well, I knew it would happen one day, and it did. Today, while waiting in line at a children's clothing store, a woman asked me if Charlie had just had surgery. I was holding him in my arms, scars and shunt valve clearly visible. I have just recently been comfortable enough to let myself do that in public places. She was interested because a child she knows is going to be having a cochlear implant put in--I think she thought that's what Charlie had. It's pretty amazing the hardware we're sticking into people's heads these days.

I calmly explained that he had a life-threatening condition known as hydrocephalus. I explained that his spinal fluid didn't drain properly, and the only option was surgery. She asked me how they found out that he had it, and I told her a combination of head circumferences and CT scans. She wowed for a minute about how great he looked, and I babbled probably a bit too much about how lucky we are that these types of technologies exist. I paid for my goodies and left.

So there it is. I explained Charlie's issues, and the woman didn't run screaming from the building or anything. I even saw another woman nodding in understanding as I explained. I'm not going to lie and say that I always wanted my baby to be the poster child for shunt surgery, but here we are, making it work, and getting some damn cute baby clothes at the same time. Things could definitely be worse.