I can do the limbo - medical limbo that is!

Well, a veritable feast of updates lately - hopefully there won't be such a long gap!
Part of the gap was the lack of anything to report - I've learnt a new dance - the medical limbo dance! This doesn't involve going over hurdles, or under them - it involves doing nothing while you wait for things to happen - and they don't!

Poor old T - he saw his surgeon on 29 April (ironically his birthday!) and we got told that because the biopsy results came back normal we needed to do a pH probe test to see how much he is refluxing. Surgeon agreed that his weight is of concern and mentioned a gastrostomy tube off his own bat - and mentioned that to the paed in his letter! So progress at last!
We explained our hesitency to go to a certain hospital and he said it'd be fine to go out of town and that it'd take about a month to organise. Fine, okay, not a problem.

Then he rings back and says he can't get him in at one hospital and he'll try another. A week later we find he can't get him in there and will try a third.

By then we were due to see the paed and she says she can organize it at her hospital and it'll only take a week or two max. She said she'd call the surgeon and talk to him about it.
Okay the max of 2 weeks takes us to the length of time the surgeon said anyway and this way we don't have to go far so all cool.
She calls back the next day and says she's got the surgeon to cancel his arrangements and someone will call me from her hospital.
And we wait.
And we wait.
And we wait.

I get the GP to hassle, no joy.
I run into the paed and ask - oh, the first week in June.
And we wait.
And I get the GP to hassle - who does some serious hassling!
And finally last week we get a call to say someone will call us later in the week - yay, thanks for nothing!

And then we got a call - it's Tues 24 June! They'll put the probe down and then send us home. I have to spend 24 hours trying to stop T from pulling the probe out - and then we'll go back and they'll pull it for him :-)

So we have waited nearly 2 months all up.
In that time T has stopped gaining weight and his eating is as awful as ever. If he was borderline for a feeding tube before he'll have earnt himself one by now! At 3 years and 2 months old T weighs a whopping 11.5kg or 25lb 3 oz!
He was on the 3rd centile for weight and has now dropped well off.
His BMI is now 14.2
I have just realised that T weighed 2.5kg at birth - he hasn't even gained 10kg in 3 years!!

He is seriously underweight and his nutrition is so bad that the hairdresser has pointed out the reason why T's fringe looks so straggly is because his hair is actually falling out and growing back thinner - and then asked what the kid eats.

In our two months of medical limbo T has now missed a June surgery date and a July surgery date. By the time the results are back and we actually get in to see the surgeon he'll have missed an August surgery date.

And so the child will continue on his path of gentle starvation until September at any rate.
He is _not_ the only one about to lose some hair!

However - I've learnt something from the special dance called medical limbo!
When he goes into hospital I'm going to actually check on his file that they write down the results are to go to his surgeon - and to the GP as a back up. The GP has written to the surgeon to keep him up to date and told him about T's stagnant weight.
I am going to find out exactly when the results are expected - and book in to see the surgeon 1 week AFTER the results are due.
I am going to get the GP to chase the results FROM the day they are due, if she doesn't have them, until she has them. Then at least she can fax them to the surgeon if he hasn't got them.

I am not going to just trust the system will work and I am not going to let any more time escape.
T cannot wait any longer.
The surgeon, after any surgical intervention, will sign T off.
At the worst, the paed will sign T off after he outgrows the paedatric level.
We cannot sign off on T.
And T will have to live all his life with any physical, intellectual and medical fallout from his repeated and prolonged malnutrition.
T cannot wait any longer.