Thursday, March 7

First Hospital Visit; Our Health Care is the Shit

When Branko was about 3 months old, we noticed a bony growth on his rib. We weren't concerned at all, but our pedeatrician wanted to do a chest x-ray, just in case. I remember taking Branko to the x-ray department at Sick Kids, all by myself, and not! even! worrying! for one second. Nothing could possibly be wrong with him! Doctors are stupid! Can't they see he's perfectly normal?!

I realize now that this x-ray was the first of many. {I miss that feeling of naivety.} That same night, my husband got a call from our doctor. Severe bone abnormalities in his ribs. Some of the bones were fused together; there are an uneven number of bones on either side; there appeared to be fractures throughout the ribs. The doctor didn't want to worry us, but she did drop the osteogenesis imperfecta bomb at this point. Luckily, my husband is a nerd with a powerful memory, so he immediately knew that this was the same condition that Samuel L. Jackson's character had from Unbreakable.  (SPOILER... we found out about a week later that he didn't have this condition...)

She suggested we come back the next day for a full body scan. Branko had to have everything x-rayed: neck, arms, legs, torso. The prognosis: Branko had broken bones, or 'bony abnormalities' all over his body. Everything from the vertebrae in his neck, to his pinky fingers, to his ankles and legs, were affected. Our pediatrician explained all this to me over the phone; she was calm but just a smidge panicky, just enough to make me want to freak the f^&k out. So I did - for about 3 minutes, but I politely waited until she was finished instructing me to pack enough clothes for a week and head on down to Sick Kids hospital. I had my freak out, and surprisingly, things were pretty clear in my head. I knew a few things right away:

1) my husband needed me to be okay, like really be okay, and not some hysterical beast, and
2) I needed to be strong for my son.

So I made a choice. I simply decided that I was going to do this, whatever THIS was, and I was going to do the SHIT out of it. I was going to be the strongest, best, motherf*&ing mother-of-a-sick-4-month-old that Sick Kids had ever seen!

We stayed for almost a week. We were mostly treated impeccably. I'm pretty sure we were considered royalty in rare-genetic-disease-circles.  Those first few days, we saw a lot of doctors, mostly geneticists, neurosurgeons, and orthopaedic surgeons, with a few endocrinologists and opthalmologists in between. Branko had blood tests, a cat scan, an EKG, an MRI, eye tests, and a skin biopsy. I'm sure there was more. I can't remember.

When we left the hospital, they still had no idea what caused his abnormalities. They thought that the so-called fractures happened during labour and delivery, and the radiologists agreed they were healing well.  Every doctor who saw him was simply amazed at how he presented in 'real-life.' They also all agreed that he wasn't in any pain. His X-rays paint a picture of someone with extremely fragile bones, someone that shouldn't have been able to roll over and move his neck up and down. The osteogenesis imperfecta prognosis came up a few times, but most of the doctors agreed that his fractures didn't quite fit this condition. Nonetheless, they decided to go ahead and test for it.

Now here is the predictable part where I talk about how our health care system rules. I mean, I can't even imagine how much all this would have cost in the US. Even with a good health care plan, I am sure my husband and I would have had to sell our house to ensure we had enough money for Branko's future care. The blood test for Osteogenesis Imperfecta had to be done in the States, and the fee wasn't covered by OHIP. However, all we had to do was fill in a one-page form to apply to the Ontario Government for the money. When I asked the doctor how much the test cost, he told me: $5000. When I asked him what the hell were we going to do if we weren't granted the money, he just smiled and said, "they won't say no, they just won't say no to this." We got the money, had the test, and got the results back a few weeks later. Negative.

Even though they still don't really know much about his condition, it doesn't really matter. I suppose it's good that I don't know. It prevents me from endless hours of googling random genetic conditions, and having permanent cry-face. 
This is better. I have nothing to look up. I can only wait, go to appointments, and make sure Branko is happy. So far, so good.

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