Bluesday Wednesday

On Tuesday, B's carer (who is an all round legend at all things B) brought him back early from after-school respite because his peg had split. A peg (stands for percutaneous endoscopic gastrostomy, if you're interested) is a tube that goes directly into a child's tummy, to allow parents and carers to administer meds and feed.

We initially had one fitted a couple of years back when B's seizures were crazy and we couldn't

medicate him orally- at which point he was having upwards of 70 seizures daily. Poor kid was totally non-functional and lost a lot of previously gained skills. The epilepsy B is affected by as a result of his chromosome condition is life threatening; he has many different types of seizure and because of this it's often very difficult to find a mix of meds that fully controls it. The peg has literally been a lifesaver for him- we're now able to medicate and instead of 70+ seizures daily we now typically see a handful of small ones, which have little impact on his day to day. He does have periodic episodes where it all goes to shit for a few weeks, but that's the exception, not the norm, and you learn to ride the waves. 

For the past year or so, we've also had to use the peg to feed him. His oral intake has dwindled down to almost nothing, and most meals now come in the form of high calorie beige gloop pumped directly into his tummy. It's quite simply shit. Especially since the reason for the food refusal remains firmly undisclosed. Our guess is it's seizure-related, but really we have no fucking idea.

Anyway, back to the story. B comes home, feed leaking everywhere. He HATES to be faffed with in any capacity, and so lost his shit while all three of us (me, S and carer L) tried to sort out the chaos. Cue curdled chunky stomach juice squirting all over him, all over S, and all over the dining room floor (laugh or you'll cry right? Or in this case, laugh or you'll vom..). S managed to bodge job and clamp it right up by his tummy to prevent further leakage - not all that comfortable for B but it's the only option we had in the moment.

A couple of phonecalls later, and B is scheduled onto the emergency paed surgery list for the next day. Last time this happened (yeah, this is the second time- ugh) I was in Swansea with the girls, so S had to deal with it all. This time, someone needed to be at home for the girls and S was working, so it was my turn to fly solo with B. I headed up first thing, even though I found out en-route we were scheduled for the afternoon list, because finding a parking space at Southampton General is like finding a black cat in a coal cellar. In a power cut. I got there at 9:30, and had three hours to kill until we could go and get clerked in on the ward. All good, we found a nearby park, and B had fun rolling his car around on the deserted skate park while all the other kids were cooped up in school. I'll be honest, it was one of those times I was slightly happy that he can't read (see hilarious pic).

We arrived at the hospital, and instantly B was on edge. For him, the only association with hospitals is being violated, poked and prodded with absolutely zero understanding as to why. I instantly felt like a shitty parent and was simultaneously mega fucked off with the universe that I even needed to be here at all. It's funny how you normalise stuff to get through. Our every day existence, to anyone looking from the outside in, is a total clusterfuck. We deal with clinical decisions on a daily basis, we have to attach B to a pump three times a day to feed him, we're responsible for administering life-saving medication, and all this with a kid who is autistic, non-verbal, learning disabled, hugely sensory seeking (read downright dangerous) and like Taz on crack. Oh, and there are three other kids in the mix too. People constantly tell me they don't know how I do it, and to be honest, nor do I. I look at other parents of special kids and think exactly the same thing. But humans are apparently awesome, and resilience, stubbornness and probably some psychological theory somewhere mean we cope. And mostly we cope well. The clusterfuck is our normality. Are we exhausted? Yes, constantly. Do we get just a little bit jealous of everyone else and their #blessed families? Honestly, yes. It sucks. But we crack on, because when you live in a warzone, you do or die. So we do. Because it's preferable to the latter alternative.

The day itself was hideous. I'd even go as far as to use the word 'traumatic' and I'm generally a pretty no-nonsense kinda gal. B kept climbing in his buggy and pleading with me to leave. He has no words but he is more than capable of making his preferences known to me as a parent. Screaming, shouting, pushing at doors, looking at me with this expression... why are you doing this to me? Why am I here? To take any kid to the hospital is a crappy experience. To take a child who is hospital phobic, touch sensitive, has no way of expressing himself verbally, has no reasoning capability to understand why you're putting him through such anguish, and who relies on you as his safe person is, quite frankly, harrowing.


After four hours of waiting around - can't fault Southampton, he was on the emergency list and that's just the way it goes - I finally got the pre- med, an excellent benzo drug called midazolam. If you or I were to take it, we'd basically be stoned. Most kids don't have a pre-med since you can talk them through what's happening, give them cream to numb their hand before the cannula goes in, and reason with them as to why a stranger is attacking them with a steamy mask. For B, none of this applies. Go near him when he's remotely conscious and you'll get kicked in the face. Hence the pre-med. It was a welcome relief if I'm honest, to see him completely off his face and for the first time in the whole day, relaxed. I took full advantage of the otherwise-scarce cuddle opportunity, and let myself breathe a little. Theatre was easy after that, he was so zonked that he couldn't fight against the anaesthetic mask, and I'd scored extra parent points and brought his toothbrush so they could clean his teeth while he was under. Toothbrushing just doesn't happen in B's normal life, since he is toothbrush phobic, so this was my one shot.

The staff, as always, were incredible. They listened to me as an equal in B's care, fully understanding I lived with this day in day out, and therefore had the best suggestions on how things should go. We joked about my socks and All-Stars (a stripy rainbow Pippi and loud yellow combo, apparently considered brave and cheery by most of the staff I came across), and decided my toothbrush request should be first on the 'Strange Things in Theatre' list. On leaving, I kissed his head, and randomly managed a completely out of context 'Have fun!' which caused another chuckle from the anaesthetists.

En route to the coffee shop (having eaten nothing and managed a few swigs of water all day) I rang S to update him, sat down, and lost my shit. In that one quiet moment, it hit me like a brick how fucking unfair all of this is. I'm not one to complain about my lot, and usually I can see a bright side, but in that moment yesterday, my world was utterly grey. I hated myself for being complicit in B's trauma, and I hated his chromosomes for causing such chaos and making this an absolute necessity in the first place. And actually, I wanted my mum. I wanted someone I could ring and rant to, who got it, who couldn't fix it, but who loved me in it anyway. This stuff is isolating as fuck, and lonely coffee shops while your kid is in theatre to fix the very device that keeps him alive just shouldn't be a thing.

Post-mini-meltdown, I went back upstairs to get my boy, big girl pants well and truly back on. I obviously didn't tell the shit hot recovery guy that though. He definitely did not need to know about my big girl pants. I'm sure he was imagining my lithe and slinky figure (ahem) in anything but granny pants... Anyway, I digress. After an emergency cannula removal - B tried to rip it out as soon as he was barely-conscious, and a quick name-tag offing- these things are super shitty for him- we averted complete disaster. I think it might have been the first time the words 'Get this cannula the fuck out now' had been shouted across a children's ward, but it seemed to convey the necessary urgency, and was much better than B's self-removal attempt. I did apologise to the other parents, who were most sympathetic, having heard B's roaring for most of the day.

He was sleepy as anything, and because of the extra meds he often sleeps longer, and always vomits post-GA. Usually they want you to stay on the ward until a feed has been tolerated without vomming, but for B this means overnight, and ain't no way on earth an overnight in hospital is happening. Again, the professionals were excellent, and used their common sense to decide that as long as I could use the new button (tech'd up- now a little porthole rather than dangly tummy tube, very excellent!) and he'd had some fluids, we could leave asap. Game on. I packed up our stuff, put some water down his peg, and quickly left, knowing full well he'd vomit it back up. As long as I was off the ward when he puked, I was good. Lo and behold, just as I reached the main entrance, the entire lot came back up in spectacular fashion. Luckily it was just water, since he'd had nothing else for about 30 hours at this point, and people rushed over to help, which was great. I wiped him down, changed him into his spare clothes which we constantly carry at all times in the magical-but-massive B paraphernalia bag, and we set off for home.

Phew. A day in the life. And these kind of days come and slap you right on the arse as a reminder of how absolutely absurd the daily grind that you so neatly normalise actually is. On the plus side, it also reminded me how absolutely incredible our NHS is, and how thankful I am to live in a society where my kid can get the life-maintaining treatments and equipment he needs. I hope to hell that come tomorrow, I live in a society where this is still true.

PS- Don't eat this. It's disgusting. You've been warned.