A rare life – day 23

Our life is dominated by routines. There are the routines we cannot skip – such as the morning and evening meds – and there are routines that fly out the window on the weekends – like the routine of getting everything set up for the next morning. Being ruled by routines isn’t necessarily a bad thing – I think everyone in our family feels better when they’re sticking to a routine, and no one more than Miss Z. And, every weekend when I get a bit soft on routine enforcement, I’m reminded why they are so desperately important.

The GJ tube and the Ketogenic diet have forced me to change Miss Z’s routines, and for the past month, it has really been a learning curve. With the GJ tube, Miss Z needs to be fed 17 hours a day, with breaks of no more than 4 hours. And with the Ketogenic diet she has to have an exact amount of formula every day – which I need to mix up every night based on a very specific recipe. The formula is only good for 24 hours and shouldn’t be unrefridgerated for more than 4 hours.

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Preparing Miss Z’s daily Ketocal formula

It will come as no surprise that at the start of the Keto diet, I had to sit down with a calculator and some paper and devise a feeding plan. And then I discovered that the feeding plan didn’t go to plan – mainly because it didn’t take into account the fact we stopped her feed every time she needed to be moved or had her nappy changed.

It also meant that as well as the feeds, I also had to try to fit in blood tests every morning before the school bus arrived. Since the bus is a new part of our routine, too, it added even more stress. When I was driving both girls to school, I had about 10 minutes of wiggle room before I considered us to be running late. No longer – we have to be ready to roll Miss Z to the curb when the bus pulls up in the morning. The bus driver is understanding, but not 10-minutes worth of understanding…

The Keto diet and the GJ tube have also changed the meds routine – although not as drastically. Since Miss Z now has two feeding tubes, I have to remember to tie a bit of ribbon on the tube that goes into her stomach (G tube), so that I can give her meds through the right tube when she’s asleep in bed at night.

More frustratingly, the Keto diet means that ALL of Miss Z’s meds now have to be in tablet form, which means more cutting, crushing and dissolving for me. Some of the new tablets crush easily and dissolve quickly, so its no big deal. Others – Keppra tablet, I’m looking at you here – are difficult to crush, get stuck in the end of the syringe, and take forever to dissolve, which can be a big hassle if I’m in a hurry.

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Start of the evening meds routine

 

Not only do we have strict routines we have to follow, but we also have to be very well organised. Running out of a medication or failing to charge a key piece of equipment is disasterous. Miss Z has a number of cupboards dedicated to her equipment and supplies. We also have charging stations set up in her bedroom for her feed pump and suction machine so they can charge overnight and run on battery during the day. And we keep a daily diary to track Miss Z’s seizures, health and anything new we might introduce.

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One of Miss Z’s many cupboards

Keeping on top of all these routines and keeping everything organised can be exhausting. But it keeps everything running smoothly. And Miss Z likes her routines. None more so than the last one of the day (her day, at least): the bedtime routine. Nothing makes her happier than a bath, pyjamas, story and bed.

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Happy in the bath

 

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