On guilt and fucking up his phenobarb dose

Some days I'm okay. On some days I feel like I have things under control - Kai's clean and in a dry nappy, the washing is happening and the sterilising is done and Kai's feeds and meds are happening when they need to. I've showered and eaten and brushed my teeth, and the flat looks somewhat normal. On those days, I feel capable. More often are the days I feel like I'm barely holding it together with sellotape. On those days if Kai is fed, had his meds and his nappy is not too stinky, I'll hold fort until Sam (thankfully!) gets home. I feel like I'm juggling all the things, and just barely making it work.

It's so easy to miss things, to drop one of the balls and mess up. Like I did with Kai's phenobarb dose.

We give Kai's medication through the tube in syringes, so everything is measured out in mls. Because everything is at different strengths, the scripts are written in mgs, and we work out the mls from the strength. As an example, Kai takes Sodium Benzoate. The script says 500mg/kg/day which we split into four. Kai's working weight is 6.88kg, so the total for the day is 3440mg, which split into four is 860mg per dose. At a med strength of 500mg/5ml that works out to 8.6ml per dose, and that's what we draw up in the syringe and give to Kai.

Fine for Sodium Benzoate,  but there is a lot of working out and thinking and rechecking that happens. And Kai's on 9 different medications each day. So it's not a small undertaking every time we get a dose change or a new stash from the pharmacy.

My fuck up happened with phenobarb. Phenobarbitone is an anti-epileptic. We've been trying to wean it since before we left hospice. It's horrid, it makes Kai vomit and it's just, blurgh. We're trying to increase zonisamide (another anti epileptic) as we wean phenobarb. Phenobarb takes forever to come out of your system, and it takes forever to load up. (Note: forever = 3/4 days).

We'd been home not even a week and I was freaking out. After a particularly unsettled day - when I was checking my calculations I thought I was meant to be giving Kai 7ml, but had been drawing up only 2.1ml - that's an extreme wean. What happens on an extreme wean? Seizures and vomiting - tick and tick. Poor Kai. I rang our hospice symptom team all in a panic, we went through all the doses and decided on a part way (3ml) doses to help ease the drop.

Here's the thing though, seizures and vomiting can be caused by a trillion things.

So, while we were in hospice, the strength of the phenobarb was 15mg/5ml. Once home, we had a new bottle with a strength of 50mg/5ml. And for a hot moment, I'd mixed them. Two days after freaking out I sat down with the bottles and redid all the calculations. The bottle said 50mg. The 2.1ml dose was the correct one all along.

I felt like such a wally. Horrified that I could have made such a mistake that effects Kai's care and well being so drastically. The guilt at my best not being good enough, the fear of hurting Kai and the anger at myself for messing up took a few days to dissipate. I know Kai's med schedule the best. I know him the best. I still can't believe I fucked it up, but there you go.

After talking to our symptom care nurse, we reduced the dose to a lower 2.4ml. She came and did a visit (and when she did, she looked at the bottle to make sure I'd worked it out correctly) and we restarted the weaning schedule.

The enormity of my responsibility for Kai feels overwhelming sometimes. Honestly, sometimes I wonder what it would be like to have a 'typical' baby. Walk in the park by comparison. But then I think again, about people I know and just how some of them would be completely rubbish at being special needs parents (not you, FYI. I don't socialise those people anymore so probably not you) and I go back to 'thank fuck he came to us' - even despite my small mess ups, and despite bad days being held together with sellotape, we've got this. We're capable. His best shot is with us. And then I feel much better.

 

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