'Mummy instinct' versus protocol

Children who have had small bowel transplants are supposed to go to hospital when their stoma output hits a litre. Occasionally, Wills pours around this much overnight when he's on his feed. It's just something he does and I think it's because he eats a lot in the day now (but limited variation hence still needing the feed) and he can't be sick because he had a Nissen's Fundoplication, so if his body doesn't want the feed it comes out as stomal fluid. 

Last night, he had more than he's ever had overnight. This morning all my alarm bells were ringing and my finger was posed on my phone to call the hospital but there was something telling me it's a blip and he's fine. He carried on pouring until about 8am and, admittedly we've stopped all feed and water for a bit, he's had nothing since. Protocol still says I should take him in but mummy instinct is watching my very pink, healthy looking child, asking for cake and milkshake (which he's not getting), singing along to his beloved 'Horrible Histories' DVDs and thinking that, if we can get the water he's lost into him during the day with no more high output then he's fine home. If he deteriorates or id he starts to pour again then we'll be in hospital within half an hour - the bags are packed.

If we go in he'll be put on a drip and then feeds started gradually and we could be in for several days, meaning he misses his last week of term and his school birthday party and the girls get disrupted and upset. Of course, if he needs it he needs it but there is just this nagging feeling that last night was one of his unexplained blips but just a bit more spectacular than usual -  he ate chocolate, a bag of crisps and had two big milkshakes in the day and then a litre of feed overnight so that could well have been too much for him.

There have been other times when protocol would say he's fine. When his temperature hasn't quite hit the 38 degrees centigrade that means he should be seen or his stoma output is 900mls but he looks terrible. In these situations, mummy instinct tells me he's sick and needs to be seen but, occasionally, I've been told to hang on and see if he hits the magic numbers. When he has been sick he has done and we've been in a few hours later or the next day. 

I know some of our transplant team read this blog and I'll be in trouble ;) but I do wonder sometimes where the role of 'mummy instinct' is for our children. Wills has been in hospital for 3 days on IV antibiotics before, waiting for blood culture results, because that's what protocol says when we knew he just had a cold. These days, I do tend to chat to our team and discuss things on balance and we often agree to sit and wait in these kinds of situations. I'll call them tomorrow and discuss todays predicament so they know and can decide if they want to see him sooner than his next scheduled appointment. Of course, I'll call them today if things deteriorate or continue. 

I wonder what other people do with the 'instinct versus protocol' issue? Protocols are great and, in the early days after transplant I'd have never questioned anything. I certainly still wouldn't question symptoms that were unusual for Wills but there are certain things where patterns emerge and you just get to know your own child. You also don't want to put then through procedures and treatment that you know an on call weekend doctor will do because all they can do is follow protocol and don't know the child or you. How much should you trust this instinct and your own personal understandings and experience? I'd be really interested to hear what people think.

In the meantime, I gave Wills about 50 mls of meds and flush an hour ago and nothing has appeared in his stoma bag yet. I'll restart the water in an hour and we'll see how we go. Then we'll move to diorylte and then back to feed. He's desperate for a milkshake. If all that goes OK without any more pouring then my instinct was right. If not, you know where we'll be and I won't be so quick to trust my feelings about things again.