Jovie Wyse is 24 days old. In her little life already she has been kept in a giant fish tank while a machine does her breathing. She has been poked and prodded by the finest doctors Worcester (who guessed from meningitis to brain damage but couldn't fine what's wrong with her) to Birmingham (where she has had tests on her brain, lungs, muscles, nerves, head, shoulders, knees and even toes) have to offer.
She has been pumped full of paracetemol, morphine, gaviscon, ketimin, two drugs I can't spell which half the nursing staff hadn't heard of and more caffeine than an Eddie Stobart driver heading from lands end to john o'groats.
After Worcester couldn't figure out what was wrong they shipped us up here. Collectively she must have been seen by 50 nurses and dozens of doctors. She's had new born babies weighing 500g and 6 year old boys who look like the kid from Stuart Little as neighbours.
We've cried over her, laughed over her, argued a little over her, sat staring at monitors all night over her and even grew closer over her.
Throughout all of this jovie has remained an amazing little mystery.
There have been times where we have questioned the hospitals for how they have gone about things. Times we have been excited enough by progress to allow ourselves to get excited about the things we so want more than any other and there have been times where all hope has completely escaped us.
What we haven't had, and what jovie hasn't had, is any kind of an answer. Yes we've had guesses. Some logical, some ridiculous. But we have had no answer as to what is actually wrong with our little girl.
Now i wouldn't wish all this on an arsenal fan, but if anyone is ever in this position, the one thing you want more than ever is an answer. Perhaps we are too stupid to deal with things without a reason, perhaps we just need to know what's coming next. The desire for an answer is so strong you find yourself hoping tests come back positive, just to explain things. Its literally the most horrible feeling ever.
Well we still don't have one.
However, for the first time today, something seems to have clicked. So we have another guess, but one that makes sense.
A scan of jovies brain stem activity has revealed a problem in the area concerning respiratory action. The caffeine treatment was a predictable failure today. But rather than the docs going off on another tangent they have decided to finally call a spade a spade. Or in our case, a respiratory disease a respiratory disease.
They are by no means certain but the thinking now is that jovie is suffering from a rare disorder called congenital central hypoventilation syndrome. Its a sleep disorder often refered to as ondines curse after an old tale about a man who cheated on a nympth who was then cursed to forget to breathe when he slept.
While its not guaranteed that this is what jovie has, the docs have been wrong more than once with their diagnosis, it is what they are currently treating her for. This involves a new type of ventilation which keeps her breathing regularly and allows her to sleep without having to be physically forced to start breathing as and when she has one of her moments.
Again its a time thing. The actual test for the disease may take weeks to come back, and jovie may require another mri scan in the meantime. But for now at least it gives us an answer, which we've been wishing for...
BUT. The problem now is not only do we have something to concentrate on, we have a very serious potential to worry about. In the grand scheme of things if it does turn out to be this syndrome, then it could have been a lot worse. We are told people can live relatively normal lives with it and even in some cases grow out of it.
Does this stop us worrying about it?
There's more chance of Barcelona playing a long ball.
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