Not sure where to start. Spent the last week in hospital with Kira. Only went in for a check up. We were discharged last night even more confused as to what her condition is. They aren't really planning to investigate it further; they're just fobbing us off as usual.
I'm so angry. I literally sat in the bathroom and just cried. They told me they were stopping her medication for her heart and were prepared to leave her for a few years before they'll do surgery. I really don't understand it. They sent her home with a NG tube for her feeds, her breathing is a lot worse, she's coughing and gagging all the time now and she's had five days of the most horrendous nappies - so bad she has nappy rash and blisters all over her. Why would you leave her if she's clearly just getting worse????
It's so unfair. I can't believe they would just leave a baby like this. I don't understand. I feel so fucking helpless. I keep complaining and asking to speak to people. I'm repeating myself over and over, asking the same questions hoping to get different answers. But it's not changing anything. Me and Avi are considering just taking her down to London and hoping that they will see her there. We've heard good things about the cardiologists there. Failing that, I guess we'll have to go private. That's the only way we can demand tests and treatment in this country.
I don't even know what else to say. I'm sick to death of this now. I can't just treat her like a normal baby.She can't even sit up, hold her head up properly or even hold things in her hands and she's four months old. I can't sit and play with her cos me and Avi have had it drilled into us that we must feed her and let her sleep. Anything else is burning precious calories. ARGH. There's been so much pressure put on me these last few months to pile the weight on her to the point where it's become an obsession. I'd sit there for hours and hours.. literally, grabbing every chance I got to get more milk down her.I'd change her nappy, wash her face, tickle her.. anything to stimulate her in some way and get her to drink that little bit more. And every single god damn person , and by person I mean medical supposed professional, has said that I had had HAD to get her to gain weight so that she could have her surgery.
Now, this doctor who has known her for like.. a couple of days, and doesn't really know anything about her, has taken her off her medication and saying he isn't prepared to do surgery until she's in preschool. He's considered the top doctor, too so I can't really see anyone else goin against what he says.
Can I sue? What the absolute fuck am I supposed to do? At this point, I can either take my chances with another hospital, or stand on the corner of lime st in the hopes of finding me a chubby chaser, and pay for it privately.
Seriously. What the actual fuck!
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