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Wednesday, February 08, 2006


Touch and Go 

On Monday, Tara was on the verge of death, following a nosebleed which we had thought had stopped bleeding. (It was bleeding behind the clot, and she was swallowing the blood, so we couldn't see it).

She had a bad bleed at New Year, and her haemoglobin levels were already low. Another thing we hadn't been told - that it can take months for levels to stabilise. Haemoglobin, for non medical people, and for parents of VWB children, although they don't tell you that, is the stuff that carries oxygen via blood. Low levels can be fatal.

So there we were thinking the bleeding had stopped, and the listlessness was due to a bug. There has been a bug in our town that has produced symptoms identical to those Tara displayed. Indeed, at the time of her hospitalisation, more than half her class were home from school with it.

Sunday night she vomited lots of blood, and lost consciousness briefly, so we summoned the paramedics, who failed to recognise the signs of low blood oxygen, and called London. The "on call" doctor told us to bring her in the next day.

By the time we got to the hospital, her lips were white, and her mouth blue. She could barely keep her eyes open.

They took one look at her, and gave her a transfusion.

Several actually.

The lack of oxygen in her body could have caused respiratory / cardiac failure or brain damage.

Now - given the two sets of advice we acted on, you can understand how mad we are to have been rebuked for leaving it so late bringing her in.

And that we didn't look "panicked".

Well of course we didn't. Firstly, we had no idea she was being suffocated. We're not Doctors. Nobody had ever mentioned the haemoglobin stuff before.

Secondly, we believe that no matter how concerned you are, you DO NOT let this show in front of your kids. It makes things worse, right?

Don't get me wrong. Tara's condition is not a textbook VWB case. The doctors are also on a learning curve with it, and once admitted, the care was great, the ward clean, the food and staff / patient ratio excellent. She even had her own phone and cable T.V over the bed. Better by far than our local N.H.S hospital, although parking fees in London are a disgrace. £3.50 per hour!

However, do you get the feeling that somebody was trying to pass the buck, and cover their own asses?

If, as we were told yesterday, we should bring her in WAY before lack of consciousness occurs, why we were told to wait until the next morning?

She's fine now. But we're not. We had "hospital fatigue" last week, which prevented us for being as assertive as we should.

Follow-up appointment next week.

Advice?


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