The Routine.

We’re a ragbag bunch. We weren’t always. For years BC (Before Children) I may have appeared slick… Well, at the very least well oiled. I was in charge of me, my biggest challenge being my hand wash only clothing. And then I’d bung most of it in the wash once it lingered about at the bottom of the laundry basket long enough. I digress. Four weeks AD (After Dulcie) there is not even a semblance of slicknicity. Sure, I’m gloriously happy and fairly horizontal about life, but I’m just trying my best to get through a day. The bar is set at all of us ending a day dressed, fed and with meltdowns kept to a minimum. And two out of three will do me. I’ve adapted- I can now operate a gastrostomy pump with my toes whilst feeding the smallest D. I can change a ferrety two year old’s nappy with a tiny mousey newborn over my shoulder whilst putting on CBeebies with my foot. OK, that’s a lie. I just wish I could do that.

You see, fortune has favoured the brave. And sods law intervened to bestow Wolf with gainful employment two weeks AD. That’s average paternity leave I know, but I’d got used to him being around. I’d adapted to that well, it wasn’t difficult to fully engage my inherent laziness. A capable man is our Wolf, and I’ve ridden the crest of that wave for far too long. I am very, very pleased for him. But, holy crap.

First week I calculated in stages, akin to learning to ride a bike. Full pads and stabilisers on; Rufus was at the childminders. I merely had to collect him and bathe him. Stabilisers off; my Mum came to assist in the copious eating of biscuits and simultaneous childcare. Elbow and kneepads off; I had them alone, but we were under house arrest. Nobody would have to know how many of my three I’d achieved. But I surprised myself. Once the shackles of general can’t be arsedness wore off, I found myself quite capable. I achieved leaving the house, playdates, even…. A trip to the supermarket. For three items, but still. But I was still winging it, so when a letter plopped through the door for Rufus to have a routine operation, I should have eyed it suspiciously. Because he’s a massive thrower of curveballs. Just when you think you’ve got it sussed, he completely unsusses it.

Whilst on my mission to walk Dulcie out of me during my induction, I waddled through the children’s hospital, connected as it is to where Dulcie was due to arrive. As Team Birth made their way along the main thoroughfare I bumped into Rufus’s dietician. General chitchat, but I happened to mention that his PEG gastrostomy was getting too short, unable to snake its way under a vest and out of his trousers effectively anymore. Thought nothing more of it. Think I had something to do… Anyway imagine my surprise to receive notification that this would happen in three weeks. I naively felt lucky. Get it all sorted.

An intermediary meeting with his renal consultant. Confident of him being a drive through patient, just order it super sized on a Friday afternoon, you’ll be home for dinner. Wolf had that look on his face, a whiff of uncertainty. But whether it was the sleep deprivation or the fact that he’d sailed through his last sedations with little ill effect, I’d have to say I was complacent. Blasé even. I convinced myself that Rufus could follow this routine, and we’d put our new skills as a family of four to the test and end up laughing about it Saturday morning. I studiously ignored the low level leaking from around his existing PEG site over the last two weeks and packed a double nappy bag.

Friday came, and we yet again entered the black hole of non existent timeliness that the hospital resides in. Rufus became more and more frantic given he had been starved since 6am and we were already pushing on 4pm. Apparently having the biggest notes on daycare doesn’t give you an instant queue jump. Wish we’d collected Nectar points. Children went down for teeth extraction and came back. We lingered. Their screams unsettling both our children, but we battled on. Didn’t want to cause a fuss. The surgeon eventually showed his face, we knew him. We’re one of ‘those’ families. Racked up too many GAs. There’d been an emergency, would we be prepared to reschedule? Words weren’t entirely necessary. My watery eyes, the pet of my lip. The unquestioning look, surrounded by the detritus of the day. No. It was going to be routine after all, and our hometime routine wasn’t up to me doing this alone. No.

5pm came, he went down. So this has been our general rule under these circumstances. Wolf does sedation. I do recovery. How it is, divide and conquer. Routine again. Back on the daycare unit we waited. Only going to be an hour. Think we managed a hot beverage. An hour passes, the surgeon returns. Maybe we were smiling, waiting to hear my time had come. But, a complication. Ouch. Rare, barely registering as shocking. He’s fine, but he has a buried buffer. His body was ingesting his PEG. I think of the line from Grand Designs that week. That’s the thing about old buildings. Eventually nature reclaims the space. So an excavation was required, took longer than expected. Stitches. He’ll have to suddenly spend the night, rest up, still nil by tube. My eyes feel the familiar sting, so I make some daft jokes. Be cool, be cool. Prepare myself to go and get him, calm him down, educate the team about his fondness for cannula destruction.

He was upset, to put it mildly. But that’s how he recovers. Loudly. I am his protector, I explain this is routine for us. Where’s his cannula? You need to tie it down like this. A ‘chat’ with the anaesthetist over the screams, telling me about his nephew who is ‘just like Rufus’. I engage but I don’t really hear. My heart is too busy breaking at having to restrain my child, stop him from hurting himself. Something about his blood pressure dropping too low during the operation. Trying to understand what pain relief he’s had, get his cannula to flush, start the drip. Hope hope hope that it works. I survey they various marks where they have obviously trialled and failed to site others. I try not to look at the wound. There’s a level I don’t go to yet.

Back on the ward we hastily make plan B. Wolf will stay with him. Dulcie and I will return home. This is new for us. Torn, but yet again, divide and conquer. He calmed, fell asleep. The two babies in the cot together. OK, so home tomorrow, I unclench my jaw slightly. Head home. But Rufus begins chucking curveballs around in the night. He reacts badly, in the grips of pain, confusion and the itch of morphine he becomes possessed. Feral. Self injurious. Wolf can’t help him, nobody can. He can’t sleep, won’t sleep. The cannula fails, he has to feed him drinks of water keep him hydrated. Not easy when he drinker is thrashing and screaming, clawing at his skin. Trying to self soothe by rocking side to side frantically in his cot.

Calm in the midst of the storm

Dulcie and I arrived Saturday morning. Rufus still in the grips of his animal like status, Wolf white as the Sunlight sheets. Rufus eventually concedes defeat, gives into sleep, but fitfully and never for long enough. I fail to hold back the tears, he looks sorrowful. Grazed, sunken eyed and dry mouthed. I balance feeding Dulcie and wanting to comfort my boy. But my cuddles provide little respite, in fact they seem to worsen his malaise. More tears from me. I grasp at straws to help him… More sips of water, ask the nurse about his pain relief, organise his feeds, ask for sudocrem to ease the scratching. Massage it in, hold him close, fan him with his ‘Congratulations on Being Brave Certificate’. I nail it, he calms. I uncrack my neck. We attempt to lift him back in the cot. Curveball. His PEG has leaked all over me. I am covered in stomach contents. The tears fall again. I try to decide whether to press ‘nurse call’ or ’emergency’. Settle on nurse call and frantically pace the cubicle. Bleep to the surgeons, they should be here soon. A contrast scan ordered, another night of this confinement on the cards. Wolf goes home for a few hours to decompress, the nurse and I carry the two mini Ds to x-ray. Lots of clucking over Dulcie whilst I try and hold onto a worsening Rufus. This hurts, nobody wants my boy right now. I steel myself, squint my eyes over the screams and talk confidently with the radiologist whilst inside I churn and ache. I have to do this.

Giving good ‘ill’ face.

All is reassuring. Once he’s fed more he’ll calm down. Piriton prescribed. Left field curveball, he does calm, but suddenly his temperature spikes over night. Course of antibiotics prescribed. Length of confinement extended. Sunday some of Rufus returns. He starts kicking his toys. His eyes open beyond slits. He is quiet and withdrawn but there’s my boy. The demon that had taken hold had been exorcised. Family arrive to relieve us of ward duty, the light at the end of the tunnel is palpable. He is released on Monday, we all breathe again. We have had to return, wound management and infection control required. But as we step over the threshold of our bubble on Monday, I can feel Rufus relax. He comes back to us. He knows he is safe.

So routine. Sod routine. Give me ragbag anytime.

A blurry, but happy mess. Routine, meh.

2 thoughts on “The Routine.

  1. You write so well Betty…I cant even imagine what you are going through. Keep up the writing Im sure it gives you solace. Love and hugs x Anita

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