"Tube out! Big Grrr Mummy?"

Yes, we've done the pH probe!

I am so proud of T and how he handled it all. That kid has real guts and courage. He was even playing happily in a huge cardboard box yesterday evening!

However the night wasn’t so good and somewhere between 2:30am and 6am he pulled the probe out completely.

I checked on him regularly and he woke at 11:30pm, upset but not messing with the probe so I resettled him. He woke again at 2:30am, again upset but the probe was still fine. He woke briefly about 3:45am but as I’d only managed about 2 hours sleep I left him as he only cried a couple of times. So I don’t know if the probe was still in then. T woke and wanted to get up around 5:30 (he often gets up then) but P persuaded him to snuggle back down – but didn’t check the probe.

T got up at 6 and when P flicked the switch to say Thomas was upright he noticed the probe was reading zero and then noticed that he’d pulled it completely out of his nose!

We’re just hoping he pulled it out between 5:30 and 6 when he would have been more awake anyway – he’s got the lovely toddler habit of excavating his nose with a finger and he might have pulled it then. It has to have been in for 18 hours (4:30am) for them to even bother to read the results apparently. If he did it at 3:45 then it’s all unusable and we have to back to the drawing board.

I have stressed to the nurse this morning that we have a surgeon waiting for these results and we need them asap. I told her about the lack of weight gain, his position on the charts and the surgeon looking at a gastrostomy tube. It seems, depending on the tech’s work load that the results could be back by Friday but definitely by Tuesday. So I’ll get the GP to call the clinic then to get the results. If she talks to the paed instead of me she might be able to fix the weight issue where they miss weighed him last time he was at clinic – she clocked him at 12.25kg and the GP’s consistently got him at 11.5kg. That’s too much of a difference to be just scales – and enough of a difference that he looks sort of okay on the charts.

If we have to do this $^&& test again then I’m going to insist they do it IN hospital. The only way we could have prevented him doing this would have been to stay up all night sitting beside him.

Never simple!

And so we got the results back and it seems that T managed to pull the probe around midnight (which I find hard to believe because when he woke at 2:30am I pushed the event button and it shows the pH the machine is reading and it was around 5. At 6am it was showing 0 when it really was out!)

So the doc has said the results are incomplete and has only done a screen dump of the readings with very little interpretation. However – he has said right at the start of his report that T’s previous probe did not show reflux. T’s previous probe was done when he was 3 months old. It was not done correctly – even the hospital paed at the time acknowledged that – in writing. All of that stuff in T’s file is subject to an extensive complaint. T’s current paed says that probes done on very little kids can be unreliable. I know from my own research that pH probes have problems anyway which can greatly increase false negatives.

Thanks to this stupid doc’s comment at the start of the report our GP read it as not showing reflux – while he didn’t actually say that - he didn't say ANYTHING!

The poor kid managed to have 142 reflux episodes over 15 hours. He had 7 long ones and the longest was 17 mins long. He spent 12.9 percent of the time with a pH under 4 - yeah this kid doesn’t reflux??

He ate and drank very little the day of the test so he didn’t even have much in there _to_ reflux! It may be mild reflux – but it’s wrecking havoc on him.

We have to wait until 29 July to see the surgeon and T was weighed again yesterday – still 11.5kg. He hasn’t gained since before 11 April.

The surgeon had better do _something_ because T can’t take much more of this.

On the positive side Thomas has really got into jigsaws and learnt how to do a 25 piece puzzle in the space of 3 days with a little help to start with but has been doing it by himself for the last few days – needless to say I’m buying him some more!