Additional Needs
Puberty has landed
by Carolyn Voisey
on 11th April, 2024
A Hard Day’s Night
I could barely function in the day time without copious amounts of coffee to keep me going. The nights seemed incredibly long and drawn out.
The baby books would remind that it was just a newborn phase and friends would assure me it wouldn’t last forever.
I remember my mum telling me to make the most of those nights, for they’d be over soon and I’d come to miss them. I wasn’t sure I believed her, but I tried to make the most of those times.
The middle of the night/early mornings when the rest of the world was asleep; just the two of us, snuggled together as he hungrily fed for what felt like the hundredth time.
It felt quite magical at times and despite feeling permanently shattered, I was confident that he’d outgrow it eventually.
He didn’t sleep through the night for a long time and just as he started to, his little brother arrived.
Hugh was born when Sean was just 14 months old but him waking up for feeds was the least of my worries. Hugh had reflux and could projectile vomit across the room.
My night times became even busier, catching puke, mopping floors and trying to stop him choking on his sick.
By the time he developed epilepsy at 9 months and would frequently stop breathing in his sleep, I’d more or less forgotten what sleep was.
For the first few years of Hugh’s life, I rarely slept deeply. I cat-napped and I dozed with him beside me so that if he stopped breathing I could resuscitate him.
Truth be told, with a wilful toddler in the house as well, I’m not sure how I survived. I’m not sure how any of us did!
We’ve come a long way since those early days. Yet I’m still up frequently in the night to deal with the myriad of issues that arise when you have a child with complex medical needs.
Bed time starts around 7pm for Hugh – he ‘asks’ to go to bed by rubbing his eyes and pretending to be sleepy, but he really just wants to spend time in his bedroom with his bubble tube and his fibre optics.
8pm is his official bedtime though. I set up his overnight tube feed and give him a cocktail of medicines for epilepsy, reflux, constipation and to help control his secretions.
I then spend about 15 minutes wedging him into his specialist sleep system which helps keep his spine straight and prevent his scoliosis developing further.
Next, it’s time to attach his SATs monitor to his little toe. This monitors his oxygen levels and heart rate overnight and will alarm if his oxygen levels drop to low, indicating that he’s stopped breathing during a seizure.
By about 8:30 he’s ready to sleep and he uses his little button with ‘goodnight’ recorded on it to say goodnight to everyone in the house.
Usually he falls asleep pretty quickly, but if not, I give him melatonin to help him nod off.
It’s the staying asleep rather than the dropping off to sleep hat seems to be the problem for Hugh and he will wake frequently throughout the night.
I can give up to two doses of melatonin over the course of the night to help him drop off to sleep again if necessary and I’m regularly drawing up medication at 2am.
Seizures are another thing that wake him, and us, and although thankfully they aren’t all ones that require us to resuscitate him, we do sit in with him and use his vagal nerve stimulator to try and help the seizure stop and to improve his recovery.
Other reasons he wakes are due to pain from reflux, wanting a change of position and for various reasons I can’t fathom but often involve lots of tears.
Hugh’s non-verbal so working out what’s wrong can take a lot of guess work. He’s developed sleep apnoea recently and so his SATs monitor will alarm for those – often waking him.
We also get false alarms where it can’t detect his heart rate, again waking us and Hugh. And when Hugh wakes and wriggles his toes a bit too vigorously, it will also alarm for that.
Each time the alarm goes off, I jump out of bed, heart pounding – any one of these alarms could mean he’s stopped breathing completely and needs resuscitating.
Sometimes this is the case and of course then, being awake at 4am is a minor concern. However, for every one genuine alarm, there are many, many more times when he’s (thankfully) absolutely fine.
Yet, I then return to bed with a racing heart and adrenaline coursing through my veins and have to try and get back to sleep before I need to get up again.
I have a bit of a love-hate relationship with the SATs monitor – I completely rely on it to keep my son alive and it has, without a doubt, saved his life many times by alerting us to him stopping breathing.
However, when I’ve been woken by it unnecessarily for the 7th time in a night, I could happily throw it out of the window.
That said, I’d still take all the false alarms, knowing that it will wake me when Hugh does really need my help.
I bought a Fitbit to track my sleep and heart rate and discovered that not only does my heart beat ridiculously fast when I should be sleeping, but also, I rarely sleep for longer than an hour at a time.
The sleep graph looks more like a bar code there are so many periods of restlessness and awake times punctuating the navy-blue section depicting deep sleep. It’s no wonder I wake some mornings feeling like I’ve not been to bed.
On my days off, I tend to go back to bed after the boys have gone to school, when I’m working though, I have to power through the day on coffee alone.
I realised recently that I’d been having sleepless nights for 9 years! So much for it being just a new-born phase eh?
Having said that, I do try to bear in mind that maybe one day, he won’t be here and I’ll miss being needed in the middle of the night.
And I confess, when he’s wide awake and giggling at 2am, I can’t help but join in.
