When Isaac was five months old, way back in June of 2009 (right before my grandmother died and part of my family decided that they really didn’t approve of me and everything went to fucking hell) Isaac was hospitalised for a suspected intussusception in his bowel.
The ultrasound was inconclusive, but the screaming (good God, the screaming) was not and he was admitted for observation.
In the morning, whatever had caused the pain had eased, and we were sent home, none the wiser as to cause.
Then life went to hell for a while and a few years later, we are finally clawing our way back to some semblance of normality. Since then, both children have been diagnosed with autism, as well as Ehlers Danlos Syndrome – two added things that make everything else very complicated.
Isaac has bowel issues, that include, among other things, constant leaking. He’s in nappies and we’re trying to transition him to underpants, but when he is leaking poo nearly constantly, it is not all that easy.
We’ve been trying, with our Paed, to get Isaac’s issues sorted (bowel issues, autism issues, hypermobility issues) since some weeks after his suspected intussusception. Considering that was two and a half years ago now, I think we can say that we’ve failed. Or that we’ve been failed, because the medical system seems to see us, scratch their heads and send us away to “wait and see” or to “deal with his sensory problems and see what happens”. Basically, here is the too-hard basket, sit in it for a while.
He’s not constipated and nothing works to clear his bowels out. Nothing, nothing, nothing. We don’t have a day in which I don’t change a dirty nappy every hour, or underpants every 20 minutes. It’s wearing. It’s frustrating and honestly, I’m a little sick to death of it all.
This afternoon however, I went back to our GP (who until this point, assumed that the Paed was managing the children, because he didn’t see them except for sore ears and immunisations). I dumped the entire issue in his lap and requested to be referred somewhere better. To someone who specialises in bowel issues, bonus points if they know children as well.
And he did.
I’m not sure whether to laugh or cry, because it was that easy. It’s been over two fucking years of this bullshit – could our Paed not have sent us to a specialist YEARS AGO?
Why, yes. Yes he could. But no, no he didn’t. And life was so chaotic at that point, it was easier to let someone else do the managing for us.
It’s a waiting game now, again – but this time, there might actually be light at the end of the tunnel.
Or at least, someone who knows what they’re doing.
{ 11 comments }
