Christopher has put on even more weight today and he looks huge around his waste. I've even had to send out for new underpants for him as the ones we brought with us don't fit him anymore. His right leg is double the size of the other one and he's walking with a limp because it's so painful. Christopher still has a lot of fluid on his lungs, but they assure me that they're keeping an eye on it. Also Christopher's INR levels are sky high. They're meant to be between 2-3 and they're 9.4. Worryingly high I'm told. So his Warferin has been stopped for now. We've been talked through the do's and don'ts of the drug, it's serious stuff and he's on it for life now. The cardiac liaison nurse say's he can't play his beloved football anymore because it's a contact sport and its potentially very dangerous for him now. She's also talked through food and lifestyle changes with us. It all seems very depressing. She's also putting a care plan together for when Christopher goes back to school. We've just been told that some Children's Hospitals in this country don't even use Warferin. so all these changes to Christopher's life don't need to be made if he stays on Aspirin. That makes me so mad and I cant stop thinking about how Christopher's life will change forever. If he needs it, then he needs it and that's different, but when some do and some don't and there isn't any actual evidence that its best, then I'm really unhappy with the hospitals decision to put my baby on Warferin.
Christopher is truly amazing and inspirational. He never moans or cries, he even says thank you to everything, even when someones taking bloods or causing him pain. Everyone who meets him remarks on how well mannered he is. I'm very proud of him, he's a star!
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