The Bags are Packed but The Shelves are Full

A pair of shoes for the day. Maybe two- closed toe and sandals. A dressy shoe in case you get to go out somewhere nice in the evening.

A capsule wardrobe carefully put together with a key colour and some accessories that can dress something up or down.

Matching undies and maybe a nice nightie. It is holiday after all.

Certainly not: 3 cardigans, spot cream, knickers you last wore whilst doing burpees in a muddy field and no pyjamas. 

But then my bag was packed by a flustered husband who was trying his best. Who had last seen his son unresponsive as an antibiotic anaphylaxis bloomed across his porcelain white skin. After carrying his 3 year old daughter on his shoulders to find the car I’d abandoned. I had had to call 999 from the side of the road. I’d dialled as I’d  watched RD seize in my rear view mirror.

But that was a few weeks ago now. On the weekend that was British Summer Time. At 10.22pm I watched as RD was put to sleep in my arms, his septic dialysis line apparently almost fell out in theatre. It should do, it had only been there for 5 weeks.

There had been some signals of an undercurrent of a burgeoning conversation.

In A & E, as I held the oxygen close to RD’s face whilst keeping up the toddler conversation with DD as she ate “her favourite sandwich ever” on the floor in resus, there was a brief snippet.

“The line has to come out”

“Okay, and then what?”

“Well, then maybe nothing”

I’m guessing that I didn’t respond with a ‘smeyes’. Sorry Tyra.

“Oh no, I mean we see how he does whilst we clear the sepsis”.

And then, a few days later, in a stuffy hospital cubicle. We discussed how serious the episode had been, and how it could have been a lot worse.

So yet again, what next?

Well, perhaps nothing. 

Nothing. The end. Making him comfortable. Weighing up the risks and benefits. 

I was firm that no, this was not the end. The line had not been placed well, it was always at risk. We had to try again. Dialysis had been transformative. I was already burdening the guilt of the infection. I could take on more if I was wrong. 

I am a mother. Wolf is a father. ‘What is best for us as a family’ is that our children have the best opportunity to feel loved and thrive. Both of us would lie on the metaphorical train tracks to save our children if needed. But we are not foolish. Or naive. Our eyes are wide open to the bumpy road that awaits us. Well, perhaps a little foolishly hopeful. Because if not, then what?

You put that conversation on a shelf in your brain is what. And continue.

After 2 weeks of intravenous antibiotics, RD wasn’t coping without dialysis. The line was going back in. We decolonised him- human sheep dip. We prepped a pain relief plan post surgery given he’d struggled so much the time before, we spent time with the surgeon discussing what line and best placement.

All went well. We felt vindicated. RD came home full of beans after another cycle.

24 hours later he looked a little pale. And hot; Over 38 degrees. Which when you have a central access line is immediate hospital admission.

Here again. This time I’ve spent the morning not showering in case I miss ward rounds. I’ve lounged in my pyjamas with the mist of grossness that can only be achieved from sleeping on a waterproof mattress. So, what next?

I get ushered along the corridor in my pyjamas, a hospital Walk Of Shame. To a small room with shit sofas and school toilet roll tissues. Been there, done that. No good comes from these rooms with their walls that could talk of broken hearts and dreams. But in a jolly shade of bile yellow.

Next. Next is:

a) this is a random virus. Treat it and the allergic reaction to the antibiotics. Continue on dialysis.

b) the lab grows cultures that we can blast with antibiotics, we hope.

c) the lab grows a bug that can only go with removing the line. But then what? Then nothing. That’s the end of the line and the end of the line. No more access. 

So how long with him then?

We don’t know.

Days? Weeks? Months? 

Weeks. 

Fuck.

We have 24 hours to wait. 24 endless hours. I grip tightly to case a.

Monday morning, negative cultures. The line is safe. I feel like I could fly and vomit at the same time. A clever friend of mine tells me to put it on the shelf in my brain. All this talk of mortality. But my shelf is full. Over stuffed. 

When RD is well, I would very nearly hoik out my kidney with a butter knife myself and give it to him. When I watch him suffer, scared and unable to understand any coping mechanisms, I worry. I worry about making the right decisions. I can only lurch from event to event, hoping that I’m doing the right thing by him at each turn. We are his voice, but sometimes I can’t understand him.

The best tonic I had this weekend was from my 5 year old niece. Bright and interested, she asked pertinent questions about her poorly cousin. In a gloriously fresh view on life and death she helped tidy the shelves.

I’m going to embrace my inner five year old: question things simply and succinctly. Stop making assumptions. And see the possibilities in everything. Including my 5 year old son with the strength of an ox but as fragile as eggshell.


And if you are on holiday, and not having to wrangle with Ryanair over a refund, please please soak up every glorious second. But you can fuck off with your tan.

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