It Gives Me a Headache

Yesterday, I called the 800 number girl child's doctor gave us for the referrals he sent out. The one that came back first was for Allergy and Immunology. Rather to my delight, and dismay, the referral was to St. Louis Children's Hospital - it is nearly two and a half hours, maybe more in traffic, from our house. However, what a phenomenal hospital! My heart and mind were all a flutter with the possibility of her seeing a specialist, and having that person look at her, take labs, and listen to our concerns. The moment I called the clinic, referral number in hand, those hopes were dashed.

The receptionist began asking me if girl child had had a very specific list of blood work done. I had no idea, and it's not like I would even know what those tests are for... I didn't know I was supposed to request certain tests! The lady then tells me I need the labs and office notes faxed over to them before I can even schedule an appointment for girl child to be seen! What the actual fuck? These people don't want anything to do with us unless these labs come back abnormal in any way. And it's not like I don't see the logic behind this. I do, I really, honestly, for really real, do see the logic. So, I do what anyone in my position would do and called back to our local clinic and leave a message for the nurse that works with girl child's doctor.

Nurses hold the reigns to the doctors. They are like these brilliant, brick walls that you cannot break through. We were extremely lucky in the past with the nurses we talked to, but for whatever reason the current one we are dealing with has a distinct air of "You are being a totally crazy mom". Bless her heart, I am sure she is maybe trying to calm me down,?.. but as I mentioned before, PLEASE do not tell me she is supposed to get sick a lot and that she is building up her immune system. Please, why are you not listening to me?

And look, her first set of labs came back in a normal range... which makes me have more questions. Like, what the hell is a normal range, and what were her numbers specifically? The next set of labs, after consulting with the nurses in my own family and a friend who also has chronically ill children, will be looking more closely at her antibodies, etc. The nurse basically told me to prepare for those to come back normal as well, and to "not worry, she is probably fine". And then again the stupid, infuriating line about she is supposed to be sick... If they come back normal, no specialists.

So once again I am left wondering when to say enough and keep fighting. When to say enough and let the battle go. I am on top of this weird line in the medical world, where we have a sick child and no one is believing us. Or rather, the nurse, the only person I actually get to talk to, doesn't believe us. I mean, you can hear it in her voice! How am I to trust both my mommy instinct and trust the nurse.. a professional?! It's not like this nurse, or any of the nurses or doctors, come home with us. They don't have to deal with random middle of the nights fevers, vomiting episodes, the tears, the wanting to participate in life, that this girl experiences every.single.fucking.month. As far as I know, these medical professionals just see her as a number, a unit, to be passed along as quickly as possible. I don't feel the compassion. I don't feel anything from them.

......

As my friend pointed out to me earlier today, I am stuck in a weird, infinite circle. It gives me a stomach ache. It gives me a headache.