Masks mask my resting bitchface and actual bitchface

So the happy dance of having Nate go back to a gastrostomy button didn’t last long. By Saturday Nate was a bit retchy and uncomfortable, unsurprising after a button change and a bit of dystonia I thought. Sunday he cried at times for what could have been a 100 different reasons, Monday was grim, Tuesday afternoon he was inconsolable. I took him to the nearest A and E. For most of the 4 hours we were there we sat in the waiting room because the paeds area was full all while Nate screamed blue murder the entire time ( and no that’s not an exaggeration). The Dr finally examined Nate. Apparently they get pissed off if you suggest other places to check- like their ears... but to be honest she’d annoyed me by making a funny voice when asking “do either of you work?” and “what do you think is wrong?” IF I KNEW WHAT WAS WRONG I WOULDNT BE WAITING 4 HOURS TO ASK YOU! Knob. Nate had no obvious signs of infection, which was oddly disappointing.  By process of elimination this historically means it must be his gut being dodgy ( which I suspected but hoped wasn’t the case) something we usually treat by accessing and using his jej- you know the one he had taken out on Thursday...  

The Dr announced she had spoken to the other hospital we deal with and stated that they were ready for him. WHAT? I was a tad confused as to why we needed to go to another hospital and stay overnight but they wanted to do some tests to check all was well with Nate’s gastrostomy the next morning. I suggested we go home and instead go there in the morning due to the fucking faff on it is going home, packing his kit, going to another hospital, going through a and e and waiting for a bed, all to then be ignored for the night. They spoke to the hospital again and this was agreed as being reasonable. 

First thing this morning we set off for hospital expecting investigations. Instead we had another almost 4 hour stay where we saw no one from gastro ( or at least don’t think we did, she definitely didn’t introduce herself that way) and they wanted another urine sample ( presumably in case the other hospital hadn’t tested it properly??). I think that’s when I started to get irritated. Then more waiting just to be asked to try food again. By then Nate was crying not screaming, and only intermittently. I pointed out the reason Nate had stopped screaming was likely the 24hrs without food and should we not be looking for the cause of the pain and a treatment? Even his new gastrostomy button looked really tight to his stomach compared to ones he’s had previously and could that not be the issue? But no, they didn’t want to do anything. They seemed happy at not knowing the source of the pain ( gave no suggestions), didn’t want to touch his new button, and generally avoided my questions. I said I wasn’t happy to try food yet. Then 10 mins later the named nurse came in to tell me the plan was to try dioralyte and then some food, maybe different ratios if he didn’t tolerate it. Nice to be listened to. I wasn’t happy with this as a plan as food was giving him excruciating pain FOR SOME UNKNOWN REASON and “seeing how he goes” seemed a bit, well, fucking cruel. We tried dioralyte which was fine and it was at this point I told them we were going home. We don’t require help getting Nate “back on food”, that’s not why we came to hospital. We thought there would be a scan and some tests. FOR FUCK SAKE. 

Now masks mask my expressions which could be a good thing because I don’t hide my feelings well, as some of you are well aware. If I have a mask on it hides my seething rage. I really hope they picked up on how fucking annoyed I was at this total waste of time. I did apologise to the nurse for being an arse to which she replied I wasn’t being an arse at all, but isn’t that something you would say to someone who was an utter arse? 

So we’ve come home. Nate still crying at times but much happier. I suppose I best try him with some food then. 

Jeffares diagnosis- irritated stomach and exacerbation of existing gut issues due to dystonia and gtube change. 

Treatment gut rest for 24-48 hrs. 

And people wonder why I am pissed off half the time.