Luca’s Day

Luca is 11 years old from Bromley and was diagnosed at birth from the new born heel prick test. He is a keen footballer and is looking forward to starting seconds school, when it is safe for him to return after Covid19.

I get up and my overnight feed has finished so I detach myself and I have to take 2 Creon capsules straight away, these are to break down the fat in the feed.

I get out of bed and I have to have my inhaler(Salbutmal) and (Seretide) then my first nebuliser of the day which is a medicine called Dornase which loosens the mucus in my lungs, this is through a handheld nebuliser called an I-Neb, once it’s finished It takes around an hour for the medicine to work. 

While I am waiting I usually get washed and dressed, once it’s been an hour I would then do exercise, so it could be trampolining, football or a workout class that’s on YouTube, I have to do at least half an hour or until I’m out of breath.  Once I’ve finished my exercise I have to have another nebuliser through a pressured machine, this is a salty saline that I need to inhale to clear the mucus. 

After every 10 breaths I have to stop the machine and do a deep breath in and hold it and then breathe out as long as I can and then do a huff and cough to clear the mucus, this takes about half an hour.

At lunchtime I have my lunch and I have to take medicines, Creon, 1 (Omeprazole) anti-reflux, 2 (Flucloxacillin) antibiotics and 1 (Dekas) vitamins and one is a 5ml syringe (Domperidone) which is medicine to move food though my tummy quicker.

In the afternoon I have another nebuliser and exercise session to clear the mucus.  I have another syringe of Domperidone.

In the evening I have my dinner and Creon capsules, it’s different with every dinner because some dinners have more fat than others.  The more fat that’s in my food the more Creon capsules I have to take.

After dinner my mum sets up my overnight feeding machine.  Its 500ml of liquid that is pumped into my tummy over 10 hours, it’s really high in fat and calories, it’s around 70 grams of fat and 1000 calories, I have to take 3 Creon capsules when its starts and my other dose of medicines 1 (Omeprazole) anti-reflux, 2 (Flucloxacillin) antibiotics and syringe of Domperidone.  Another 2 puffs of my inhaler (Sereritide).

Before I go to bed I have another nebuliser which is an antibiotic for my lungs called Promixin. 

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