Any parent would move the earth for their children. Having been in contact with many families of chronically ill children since Finlay was born we’ve seen the enormous lengths that parents will go to make sure their child gets the best care.
And I too hope that I would do anything in my power to care for any of my boys. But that doesn’t mean I’m always going to enjoy it…..
In addition to not having a pancreas and his heart defects, Finlay was also born without a gall bladder. Now amongst all things Finlay this has probably been the smallest issue. In the league table of important organs it languishes somewhere near the bottom just above little toes, appendices and men’s nipples.
But its absence does present problems. Finlay can’t store bile. His liver can produce it but it just flows straight into the gut rather than get stored in the gall bladder. So when Finlay has a meal there is no sudden rush of bile, just a slow trickle down from the liver.
This means he has difficulty breaking down fat. We can supplement the pancreatic enzymes he is missing but lack of bile makes it harder for them to work. And he needs that fat to grow and also to help absorb fat soluble vitamins, A, D, E and K.
So from time to time we need to monitor how well he is absorbing fat. The best way to do this is to look for how much fat hasn’t been absorbed by looking at a faecal sample under the microscope.
So our job as parents is to get the sample. Fortunately he is still in nappies (although we’re working on this) so it’s a little easier to collect but still not particularly enjoyable.
We’d rather not get the sample at the weekend as we’d have to keep it at home until Monday and I don’t really want to have a pot of poo in the fridge between the milk and the yoghurt.
So that leaves weekdays when he is at daycare. He tends to do his poos during the day when he is at daycare (that took a bit of training but well worth it!!) so that led to this morning:
“Er…a bit of a strange request but when Finlay does a poo could you just put it to one side, give me a call and I’ll pop down and collect it?”
Now we ask a lot of his teachers: blood glucose testing, bolusing, special drinks, medications, record keeping; but I thought maybe I was pushing it a bit far with this one. To their credit they didn’t bat an eyelid. What they said once I’d left the room is anyone’s guess.
So later the call came. “You’ve got some poo? I’ll be there straight away” And to the perplexed looks of my work colleagues I put the phone down, jumped on my bike and headed to daycare. They pointed me in the direction of a triple-bagged plastic pile containing one freshly soiled nappy and two rather disgusting minutes later I was back on the bike and pedalling to the hospital lab (very, very carefully. This is not the time to fall off and end up with a soiled backpack).
So now we just wait for the results and hope it’s a long time before we have to do that again.
I haven’t got any pictures for this post, for which I’m sure you’ll be glad!