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Friday, January 6, 2012

It only took two months.....

Hurray! I finally got approved and scheduled for her Synagis (RSV shot)! Two months ago when she started her heart meds, the cardio told us she needed to get RSV shots because her heart condition puts her at a risk and a RSV infection could prove deadly. He wrote down what she needed and told us to ask her primary care physician to give it to her. Dr N (the first PCP she had, not the awesome Dr A she just started seeing) didn't do them but he referred us to the Health Department. The Health Department Nurse? Didn't even know what it was. *head desk*

Suffice it to say, we went around in circles, banging on heads on brick walls, trying to track this down for I. We called doctors, clinics, hospitals, NICUs, pediatrics, anywhere we could think of or that someone referred us to. Some told us they didn't carry it, some took our names and called us back after checking to see if they could do it for us, some said they only do it if the child is currently admitted to their hospital. But again and again, the answer was no no no no no. *sigh*

We talked to the cardio again and he referred us to the Children's Hospital since we had tried local hospitals. The people who answer the main lines for the CH are not that helpful, though--I ask for help in figuring out who to talk to and they repeat over and over "Unless you can give me a name or department, I can't help you." Back to Dr K, the cardio, who gets back to us in a few more days with a contact name! Finally, someone to talk to. He says call up Amanda, make an appointment, get the shot. I'll bet you can guess that it won't be that simple, right?

I has to apply for and be approved by the CH Synagis program. So we face several more weeks of waiting as Amanda requests records, fills out paperwork, badgers the insurance company to agree to pay for the shots, etc etc. But at least we had someone navigating this step for us :) Huge THANK YOUs to Amanda for handling all of it :) She knew exactly who to talk to, what to say, what forms to fill out and what records to request. We got the call the other day that I has been approved to receive Synagis through March and that her dosages were being shipped to CH. Today, we got the call that they had arrived and she has an appointment Monday to go into the City to CH and get the first dose. Luckily, she has not caught RSV over the last few months when she should have gotten the shots and didn't.....

Let us hope the next thing she needs is a little easy to find!