Thursday, May 02, 2013

Furious, outraged and powerless

        There are about a zillion feelings I've been experimenting on the last few days but these three words sum it all up, just to make it short.
        After a nightmare of a weekend, following some scary blood test results for Ellie, stating she's only got about 25% of the normal thrombocytes level which would diagnose Ellie with thrombocytopenia, we've contacted the National Institute of Hematology for a thorough and more reliable tests.
        They've been top notch, not only accepting to see us right away, qualifying Ellie as an emergency after they've heard the test results, but they've also been so nice, friendly, supportive and quick, taking another blood sample and coming up with the results in less than 15 minutes.
        And it was one of the most beautiful moments in our life as they said the previous results were completely wrong, due to technical aspects. The clinic that scared the hell out of us (fyi, for my Romanian readers, that's Medas) without even having the courtesy to send a specialist to talk to us about the gravity of these test results, or at least to give us the heads up those are not the best results one would expect and we need to see a higher authority for further tests, has one of the most crappy technology ever, that organizes the thrombocytes on such tight groups that they cannot be individually counted properly afterwards. Plus their reference range has not been updated most likely in ages so even the healthiest person on earth will come up as a dying person, having about 2 more days left to live. Just to give you an idea, a normal human platelet count ranges from 150,000 to 450,000 and their range is from 80,000 to 130,000. Sounds fishy to me. And it looks like all they care is take our money and send us home in complete dark. Who cares about people, money makes the world go round, right?
        I am seriously thinking to sue that clinic's ass, big time. The only thing that holds me back is the lack of money. When you decide to take a stand against a huge bully like this corporation, you need a lot of money and a humble mouse like me could never come up with such an amount. Another thing is, suing is not a custom in my country, it's not a tradition I could easily follow without being considered an outcast. To be the first to open the gates is quite overwhelming. Plus I am too soft, I cannot stand seeing others suffering, even if it's a result of their own mistake. And this was one immeasurable mistake.

        The professor at the National Institute of Hematology was oh, so very nice and professional asking his team to act fast and do more tests for Ellie, to investigate every single possibility of her getting sick so often, for such a long time, as since September she's constantly been on some kind of medicine, with no result. Unfortunately, there are a few national Holidays, including Easter, going on throughout the current week and we can only get the results on the 7th of May.
        He was also very thorough and checked every little inch on Ellie's body (yes, even down there) and the only few words I've managed to get out of him as he is a very taciturn person, were the only words a mother wants to ever hear about her children. Ellie looks like a perfectly healthy baby, she's gained the right weight, her motility and speech are quite above the standard, she's bright and she's very active in spite of all the months of sickness and tons of meds. That's all I needed at that time, after days of making all kind of dark scenarios and taking all kinds of back up measures, including contacting Ellie's Stem cells bank to see if we're still eligible for a transplant, in case of the worst news.
        Still, until we get the results on the latest batch of tests we cannot possibly live in peace, not after the shock we've been through during the weekend. Nothing seems safe now, not even the highest medical authority.
       The downside of this experience, apart from our own heartbreak, was seeing so many innocent children, hospitalized over there, suffering from a serious blood disease, sometimes with no hope of recovering. It's devastating to look at those little angels, walking around with such a sad look, with their heads shaved, their eyes with such dark circle, with no hope or smile on their faces. It's simply not fair, children are meant to be happy, they come into this world with so much hope, to live and enjoy a worries free life, to laugh out loud and spread their contagious innocence all around.


P.S.The blood tests were pure torture for both of us, I cannot express how horrible I felt standing there, powerless, seeing Ellie begging me with her big blue eyes to make those guys stop and take her away from there, shaking from every little muscle on that tiny body, shouting "mommy" with such despair, grasping my hands and practically gluing her little face to mine, with tears running all over those sweet cheeks. For the third time this month...and hopefully the last, for a long, long time...
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