Not Your Typical Night - Nichola’s Story

For many parents, experiencing a disturbed night’s sleep during the first few years of their child’s life is completely normal.

But what if your child needed 24 hour care for the rest of their lives?

lewis smith

This is the reality for mum Nichola Smith as her five-year-old son, Lewis, has a condition requiring round-the-clock care.

She has written a diary of what an average night is like for her and her family:

Time

What are you doing?

What is Nichola doing?

00:45

Sleeping

Lewis becomes grizzly. This progresses to higher-pitched crying and after around 10 minutes he settles briefly.

01:15

Sleeping

He wakes again and is grizzly, so I perform lower tummy massage. He is still upset and experiences some seizures. I give him some medication and comfort him by pushing him back and forth and after about 20 minutes he is less upset and falls back to sleep. I transfer him back to his bed, quickly document medicine in his diary and go back to bed.

02:30

Sleeping

Lewis awakes grizzling again and I can hear him opening his bowels. I get the items I need to change him, but find he has leaked through his pyjama bottoms and onto the bedding. I wash him with soapy water otherwise he becomes sore, change his clothes and put on fresh bedding. I give Lewis a cuddle to reassure him as he becomes upset when being changed / fussed with. I pause his feed (administered through a gastronomy tube) to give medication to ease his pain and then recommence his feed.

04:50

Sleeping

Lewis wakes and bangs the side of his head contentedly. I pause his feed to give him some more pain relief and recommence his feed. Lewis grizzled for a short while and then fell back to sleep.

06:30

Sleeping

Lewis wakes. He is initially happy but then becomes grizzly with a cluster of focal / absence seizures. It's normal for these episodes to begin shortly after waking, as though a mist comes over him. I perform a few minutes of bowel massage on his lower tummy and decide to watch and wait before treating the episodes as sometimes these periods resolve on their own. He feels a bit warm. His temperature is 38.2°C. Quickly got washed and dressed while watching Lewis on his monitor – zooming in on his beautiful face!

06:50

Sleeping / waking up

Stop overnight feed, disconnect and flush with 10mls water. Discard feed bottle, wash out for recycling. Lewis's episodes have settled somewhat after 20 minutes, though it's still normal for him to have several episodes an hour.

07:30

Getting ready for work / school

Draw up morning medicines after waking up Lewis's sister Holly for school.  Start giving medicines but only one or two at a time with flushes as he can't tolerate large volumes too quickly.  In between giving meds, I help his sister get ready for school, ensuring she has breakfast / hair done / packed lunch etc. Lewis unsettles again with a couple of startle fits due to noise.
Re-check Lewis's temperature. It’s 37.2°C.

09:00

Work / Housework / Getting your morning started

Set up morning feed. Undress him whilst reassuring and comforting him, as his vision is very poor and he becomes upset. Give him a full body wash, apply creams nappy and dress him. Clean his teeth later once settled from wash.

Had a cup of coffee on the go, and set up projector and music to entertain Lewis. 
When I first turned the projector on he had a startle fit and was very upset after but after a few minutes reassurance and cuddles calmed down.

Washed up medicines tray, pots, syringes , dishes / and feed cats. Put soiled clothes in the wash

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