It's a topsy turvy life

It's been a while since I posted and it's not because nothing's happening but rather that too much has been happening!

N is developing his "Frequent Flyer" status at the hospital with two admissions in the space of 6 weeks - all for the same problem - this abdominal pain that no one seems able (or particularly interested in) finding the answer to. The last admission everyone blamed the colonoscopy he'd just had (which came up with no answers and everyone seems to think that one test rules out a huge list of possible causes when in fact there is serious doubt they even took biopsies in a relevant area!), the event in November 2011 people chalked up to the magic appearing and disappearing wanna-be appendicitis which apparently children can 'just do' sometimes. But this most recent one had no hook to hang it on like that and sufficiently similar that finally the doctors have noticed and said they might be linked!

He experiences a base level of pain which probably isn't too bad - 'the usual pain Mummy, I can ignore it'. But he also gets hit with waves of acute pain which can make him double over.
The base pain level can also vary - generally following the volume of food he's eaten. So if he's eaten very little his pain is low. When he eats more it gets worse, takes longer to settle and eventually he maxes out the pain relief  I can give him at home. You know your life is topsy turvy when you are planning paracetamol doses so that you can slide in a dose before midnight if needed so that if the next day is a bad one you've kept your previous day's doses to a neat 24 hour period.

And so he had a further admission two weeks ago.
His pain had been getting worse and worse. I'd been using paracetamol and ibuprophen overlaid so he was getting something 2 hourly or so and nothing was getting a chance to wear off but he was still in awful pain.
So off we trotted to the GP to see if the dosage regime was suitable, if she could prescribe him anything stronger or she could suggest anything else. The only thing she could suggest was juggling the doses around a little so we could do a 'double up' - paracetamol and ibuprophen dose at the same time in the evening so he could try and sleep as that was being severely compromised due to pain. Apparently he's too light for her to be able to prescribe codeine like he's previously had in ED.

Yet his pain continued to worsen. In the end he spent much of the day sporadically retching with the pain. He'd stop retching as the pain relief took hold and the retching would start again around the 3 hour mark only to stop again as the next 4 hourly dose of paracetamol took hold - despite getting ibuprophen regularly as well. He was exhausted - as were we - and I was out of doses (4 of paracetamol in 24 hours and 3 of ibuphrophen in 24 hours) of pain relief and it was only 7pm. P and I had no idea of what to do to help him.
And so we wound up calling an ambulance.

I didn't want to transport him in that state in the car on my own, P needed to be at home with the other kids, and I figured maybe the ambos could give him some pain relief and we wouldn't need hospital again.
They duly arrived much to T's huge excitement, checked N over, decided they didn't like how fast his heart rate was with the pain as well and so we were off to the hospital - again.
They gave him laughing gas in the ambulance which N decided didn't help much and made him feel dizzy - but was grateful to have something, anything to help this all consuming pain.

In ED they wound up giving codeine again and anti-nausea meds but N's pain was still enough to have him moaning in his bed. In the end the pain was brought under some kind of control with fentanyl (drug they use as a light anaesthetic or conscious sedation drug) and of course he was admitted again.

Apparently his bloods taken in ED showed electrolyte imbalances and so the next day he was started on IV fluids to rebalance that. He also required codeine and anti-nausea meds again on the ward.
I don't believe he should have needed the anti-nausea meds if only the staff had been more responsive to his state and reports of increasing pain. They had started talking about a dose of codeine around 3 pm that afternoon but in the end didn't page the Registrar until 8:30 that night. By then his pain was so bad that he was retching again. The Registrar approved anti-nausea meds but said she wanted to see N before approving pain relief. The expected time of her arrival on the ward kept getting pushed back and she had to be paged twice more before finally appearing. She looked at N, had one quick feel of his tummy and approved the codeine. But by then it was nearly 10pm and he was almost at the point of retching again with the pain.

I guess I'm learning things through this - next time I will be harrassing the staff more about when doctors are actually turning up. I will also be a little more demanding in terms of - if the delay is that long can she please just approve the meds or re-prioritise because my child should not be in that much pain for her to simply be doing paperwork to settle other kids on the other ward.
But I will also being approaching things differently in ED and seeing if they can chart codeine and anti-nausea meds as "As required meds" rather than "Once only meds". The difference there is that nursing staff have more freedom to make judgement calls on requirements.

But I have also learnt with this admission that we are going to have to be pushier with staff over N's care too.
The staff point blank refused to supply his prescription formula this time. This is prescription formula mandated by his paed - and confirmed by his dietitian - who is a hospital dietitian!
The last couple of times I begged and hassled and he got a couple of cans to drink each time - not much when you consider if he's using the canned stuff he should be getting between 5-6 cans a day and the last time that was 2 cans over two days!
I'm also going to need to be stronger on pain relief as he improves - the last day of this most recent admission the nurse was telling us he wasn't due for pain relief yet despite his pain increasing and my knowing for a fact that he actually was due!

The formula issue I'm going to sort out by getting either his paed or dietitian to write a note stating it is prescribed and required. I will photocopy it and keep copies on his file I take with me. They can have a copy to put into his notes on the ward - and I will keep further copies to help insist he gets it.
I need to know he's tolerating his formula before they send him home - this last admission it took around 3 days at home to build his volumes back up again to get his full quantity. The last thing I need is to have to bring him back with dehydration.

So I guess I need to learn more assertiveness to defend my child - because it is a when, not an if, he gets admitted again.

We have only had 14 days since his last admission and still the pain continues.

We have nights when he whimpers in pain in his sleep - when he finally gets to sleep after only dozing sporadically for hours due to the pain. We've had days when he has maxed out his pain relief already.
He has not had a day without needing some pain relief since his last admission - and only 5 days in the past 6 weeks when he hasn't needed any at all. He is tired, often short tempered, frequently teary, struggling more with his school work. He will go outside to play and come in not long later saying his tummy is too sore to run around. He's frequently very very pale and drawn looking.
He also has times when you wouldn't know there was anything wrong!

But no one is any closer to figuring out what on earth is going on for my child, what is wrong with his gut and what is causing the pain - never mind actually trying to do something to fix it.
He has now had 3 admissions in 9 months and 2 in the space of 6 weeks.
And so we also need to be a bit more forth-right with his paed.
This simply cannot continue - for him - or us.
He can't be expected to live like this. It's not living.

Every time N is admitted W and T fall behind in their schoolwork. It affects W's stress levels significantly as well and has a lengthy impact on his ability to cope. We are simply exhausted living on the edge trying to keep N well enough to be home. It is also horrific and heartbreaking to watch him in so much pain so often. We are emotionally exhausted by all of this too. No parent should have to sit by their child, watching them cry and stroke their head, apologising that I simply can't give them anything more for another 2-3 hours.

The topsy turvy nature of our life really came home to me the evening we called the ambulance.
 I'd spent a large part of the day preparing samples for P for work and so hadn't done a big clean-up that day. So in the time we had before they arrived I ran round getting things cleaned up.

I had a file of info on N, paed letters etc all ready to grab. I got his meds together immediately. None of the medical stuff was a challenge but the ordinary housework?? That was the panic.
A topsy turvy life indeed.