Wednesday, 13 May 2015

A Special Holiday - Making Every Moment Count

It was our first family holiday after a time when we thought we'd never have a holiday again. 

In fact it was our first family holiday shortly after a time when we thought we'd never be happy again. 

It took some persuading to make us go.

We were scared, really scared. 

We'd been told our son would die in childhood. At one point he wasn't expected to make his second birthday. 

And when things started to get better we were too scared to believe it lest the walls came crashing back down.

We'd been living on a knife edge for so long.

We recognised the overwhelming need to make happy family memories but were terrified of the consequences of our ‘risky’ actions. We were torn between wanting to make every moment count and the fear of something catastrophic happening while we were away from home. 

But our wonderful palliative care nurse coaxed and persuaded. The charity React provided us with a lovely little caravan by the sea. We went prepared with notes and documents and back up plans; details of local hospitals and ambulance response times, a car packed with life saving medicine and medical equipment. 

That holiday was magical; a week in Wales by the sea.  The sun shone every day; there wasn’t a single cloud in the sky.

We laughed, we played, we relaxed, we had fun.

We made memories we can cherish forever.


***** ***** *****

This post has been written to mark Children’s Hospice Week (11-17th May) in conjunctions with the charity Together for Short Lives.  This year’s theme is about ‘Making Every Moment Count’ focusing on how precious time is for families by capturing moments in time.

Facts about hospice care & life limited children:
·         Most children need round the clock care – 24 hours a day, seven days a week
·         Families need support so they can make the most of every moment together
·         There are 53 children’s hospice services in the UK providing a lifeline for families
·         Children’s hospices are bright and happy places focussing on helping families make the most of every moment
·         Children’s hospices are all charities that rely on public support

Our local hospice has been a huge source of support for us.  You can find out more about Acorns and the work they do here: Acorns Children's Hospice.

Get involved:
You too can take part. A social media campaign will run throughout the week encouraging people to share the moments that matter to them by posting pictures, videos and comments on Twitter and Facebook, using #momentscount. Your moment could be a wedding, a celebration, a party, with friends and family or a career highlight... anything that captures a moment in your life that you would like to share.

So come on – share some of your precious moments using #momentscount too.

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Monday, 11 May 2015

Weaning off the ketogenic diet - an update

For the last month or so we have been slowly weaning Hugh off the ketogenic diet- the diet that dramatically changed his, and our lives, when he started it just over three years ago. The wean, so far has been going well. His body hasn't had much carbohydrate at all for the last three years so we are very slowly increasing his intake on a week by week basis. The carbohydrate is in a powdered form and is added to his daily tube feed. He is currently having about the equivalent of a small box of raisins a day- still a tiny amount!  His body needs to adjust; his gut will have to get used to this increase in sugar and his body will have to learn to start taking energy from the carbs rather than fat as it's been used to. The increase in carbohydrate is gradually bringing down the ketone levels in his blood- the by product of the diet that has the crucial anti-epileptic affect on his brain. 

Optimal ketone levels for seizure management are between 3-5 and we are consistently well below that now. So far (and please touch wood as you read this) there has been no real change in his seizure activity, other than a few extra night time seizures which have caused him no problems. We're not out of the woods yet though- when Hugh started the diet the effect was almost instant, his seizure decreased dramatically straight away, even before his ketones had reached optimal levels. So, in my humble and inexperienced opinion, the reverse may be true- even with a very small amount of ketones in his blood, it could still be having an anti-epileptic effect. Time may tell I suppose. 

We're ready to move to the next phase now which is introducing a new feed. Later this week, we'll begin replacing one feed a day with 'nutrini multifibre' which is what he was on before he started the ketogenic diet. 

Just to be clear, as a few people have asked me recently, Hugh will still be fed by a tube. He's tube fed because he's not always able to swallow food safely and I don't think he can chew at all. He was tube fed before he started the ketogenic diet. On a day to day basis his feeding regime will remain unchanged really, just the content of his feed will differ. But I hope that the reduced amount of fat in his diet will help with his other gastric issues such as reflux and constipation, though that remains to be seen.

All in all the whole process is slow, steady and carefully controlled. We're testing his blood daily to see how his ketones and blood sugar levels are reacting and keeping a close eye out for any changes to his normal seizure pattern. 

I'll keep you updated with any changes and his progress, but far things do seem to be going well. (*Touches every wooden surface available).

Thursday, 30 April 2015

When You Have a Life Limited Child Hospice Care Means So Much

I used to daydream about my boys growing older. I'd imagine them playing football in the park, squabbling over computer games and teasing each other about girls. In my mind's eye, I'd see them going for their first pints together and being best man at each other’s weddings. With just 14 months between them - one blonde and tanned, the other dark haired and pale - I saw two strong, handsome men, best friends as well as brothers. 

But then we found out that Hugh, the younger of my sons, has an undiagnosed genetic condition that means he is unlikely to live until adulthood. 

Amongst other things, he has a rare and severe form of epilepsy which causes him to stop breathing for prolonged periods of time, most recently over 15 minutes. The life-limiting label robbed me of that right to dream so far into the future, and the life-threatening label scared me into thinking every day would be the last.

In all my pre-child fantasies about what life would be like with children, I never once imagined a hospice. Who does? When the option was first suggested to me, I shuddered, sickened by the implications. A hospice is no place for a baby, my baby! I refused to even entertain the notion that we might benefit from such a place.

But at 18 months old, Hugh required 24-hour care. His needs were physically and emotionally draining. He was stopping breathing so frequently that I literally couldn't turn my back on him; I was giving him mouth to mouth as often as 15 times a week. 

We hardly slept, afraid of what might happen if we did. Instead we would doze on and off throughout the night, with Hugh between us in the bed, each of us holding his hands so that we'd immediately spot any subtle movements that might indicate he’d stopped breathing. Some nights we'd jump from the bed two, three, four or more times - one of us switching the light on and grabbing the phone ready to dial 999, whilst the other gave mouth to mouth - hearts racing, adrenaline pumping and barely enough time to catch our own breath before trying to breathe for Hugh. It was exhausting.

"The physical and emotional drain on a family caring for a child that needs round-the-clock care can be staggering. Hospices can offer a break from the pressure of day-to-day caring and a step back from the enormity of the caring role. It allows you to ‘just' be a parent again; not a carer or a nurse or a physiotherapist or a doctor or a pharmacist. Just Mum."

Added to this was the daily physiotherapy he needed to try to teach him to sit and stand, the visual stimulation to encourage him to use his eyes, the regular medications and his tube feeds 5 times a day for an hour at a time. 

And that was when he was well. When he was ill, it became more intense; we'd have to monitor his temperature hourly, do chest physio every four hours, give him nebulisers every two hours, and suctioning, all to try and prevent chest infections. Many nights the living room resembled a high dependency unit, with monitors and flashing lights and oxygen. I'd sit on the sofa drinking coffee to stay awake and alert, carefully watching Hugh as he slept fitfully in his pushchair next to me.

And through all of this I had a two-and-a-half year-old who needed me, too.

It was our older son who finally allowed me to accept that I needed support and that a hospice might be the place to get it. The fact that Sean was missing out on his childhood because I was so preoccupied with Hugh's care needs made me admit I needed help. The complexities of his condition meant getting a child minder for a few hours just wasn't an option, and so it had to be the hospice. 

Accepting that my baby was eligible for support from a hospice broke my heart. Like many people, I had preconceived ideas about what a hospice is. I imagined a sad and depressing place; solemn and morbid. But nothing could be further from the truth. A home from home, it was, and still is, warm, welcoming and inviting. Yes, end-of-life and bereavement care is a significant part of their work, but it is not their sole focus. They offer respite and support for the whole family as well. 

The physical and emotional drain on a family caring for a child that needs round-the-clock care can be staggering. Hospices, like Acorns – our local children's hospice – can offer a break from the pressure of day-to-day caring and a step back from the enormity of the caring role. It allows you to ‘just’ be a parent again; not a carer or a nurse or a physiotherapist or a doctor or a pharmacist. Just Mum. 

Letting someone else take responsibility for the burden that I felt should be solely mine was hard - but I relished the opportunity to spend carefree hours with Sean in the park. Instead of checking for emergency vehicle access and watching Hugh like a hawk, I could push Sean on the swing and run through the trees. The weight was temporarily lifted from my shoulders. It took time for me to adjust to not having my little shadow continuously by my side, but the breaks rejuvenated me, leaving me stronger to face the days ahead. 

The contentment of a full night's uninterrupted sleep, or the chance to have a quiet meal out with your husband are simple pleasures many take for granted, but without our local children's hospice, these would not be possible for us. The hospice has taken the broken pieces of our family and carefully nurtured them back to a whole. They have picked us up at our most scared and vulnerable, held us close and assured us that although they can't make it all right, they can help us through.

Though the future remains uncertain at best, the care and compassion our family have received from Acorns has helped us to see the light on even the darkest of days. We are eternally grateful for their support.

This post was originally posted on Mumsnet in 2014 to celebrate and raise awareness of Children's Hospice Week.  This year #ChildrensHospiceWeek runs from 11th- 17th May with the theme 'Making Every Moment Count' .  You can find out how you can join in and support it here:  I'll certainly be showing my support again this year and sharing the moments that count for us #momentscount