Christmas without food

foodIt’s not until you find yourself in a situation where you need to avoid food that you realise just how much of our everyday lives and how many social occasions revolve around meals or other food-based activities.  Just think about it: birthdays are celebrated with a mix of party food, cake, treats for your friends and – when you’re turning 9 – party bags filled with sweets; Easter inevitably includes the requisite chocolate egg plus Easter biscuits and Simnel cake; a catch-up with old friends often starts with coffee and cake and may well move on to drinks and dinner; and Christmas is, quite simply, the time when we all over-indulge and go mad, filling our cupboards and fridge with chocolates, biscuits, mince pies and brandy butter in a manner that suggests there’s a genuine risk that we might run out at any minute.

Our plans for this Christmas itself were relatively simple.  My Mum had suggested that we served a buffet over the festive period, rather than having the traditional mid-afternoon sit-down feast that we’ve all become accustomed to, which seemed a great alternative and allowed us to cater for everyone’s needs.  Much to my surprise, M was keen for the rest of us to sit at the table for supper on Christmas Eve, whilst he sat in the other room watching some Christmas TV and sipped his glass of full-sugar 7-up, one of the few treats he’s allowed alongside his elemental feed.  By Christmas Day, he wanted to have company in front of the TV and Boxing Day saw us eating in shifts, whilst the others played board games or watched films with M. We quickly learned to let M decide where he was happiest being at meal-times and included him in as many traditions as we could – pulling Christmas crackers, sharing the jokes, wearing paper crowns and making the time as normal as possible without focussing all our attention, and his, on the food.

Courtesy of abcnews.go.com

Courtesy of abcnews.go.com

We thought we had covered all the bases this Christmas, or at least, all those we considered to be the biggies, but it was the little things that crept up and caught us unawares.  Our Christmas stockings always include chocolate treats (dairy- and soya-free naturally), a box of tic-tacs, a handful of nuts and a satsuma pushed down to the toe, but none of those could find its way into M’s stocking this year.  I had bought Moo-free chocolate advent calendars and selection boxes for both children before we knew he’d be going into hospital and whilst M had managed to have 4 advent chocolates before his admission and G enjoyed the rest whilst he was in, I had to work out how to give G the selection boxes without rocking M’s world too much.  This was one of those small things that needed a lot of late night planning on Christmas Eve. slices

In stark contrast, Mike and I had considered beforehand the treats that usually adorn the coffee table at home and deliberately didn’t leave out the boxes of Turkish delight or the dates or the orange and lemon slices in their normal home.  Instead, we stored them in a safe corner to be pulled out once both children were in bed as we didn’t want them to be a constant reminder of what M couldn’t eat and yet he objected more to us hiding these goodies away than leaving them on display. “It just isn’t Christmas, Mummy” was his feeling on the matter, without these seasonal delights out for all to share and enjoy.

I’m not sure I know that we didn’t get everything 100% right, but given that we were very much thrown in the deep end with little advice on how to survive the day, I think we did okay.  The biggest lesson learnt was to be flexible on a daily basis and not to expect one day to be like the next, both at home and at school.  Some days M sits and chats with G at the dinner table, enjoying a Foxes glacier mint (another small treat allowed) and a glass of 7-up whilst she eats her meal and yet the next will find him close to tears and hidden away in another room for the duration.  There is no pressure for him to constantly be a part of every meal-time and as long as he spends some quality time with the rest of the family, I’m happy to give him the time-out he sometimes so desperately needs.

How to survive a hospital stay – the Parents Edition

Courtesy of yoast.com

Courtesy of yoast.com

When M was admitted to GOSH for a week for repeat scopes back in October 2013, I turned to the wonderful support network that is FABED and asked for some tips on the essential things I needed to take to get us both through that week.  The resulting list was my parent’s survival guide, a resource I found myself turning to once again before our most recent admission.  However, the one area I didn’t cover in that survival guide was what I did to get through those endless hours, especially when M was otherwise entertained or busy at hospital school and my lovely friend, F pinged me an email all the way from Canada to make this very point.  She had her own set of questions about what I’d got up to whilst M was in GOSH, telling me what I’d missed from my previous posts and I thought I’d share with you all my curiosity-satisfying answers.

Where did you sleep? – I do so hope you didn’t need a hotel

7176037017_45f555b6cc_zNo, no hotel for me, though actually there were times when a hotel room would have been invaluable.  I slept next to M’s bed in a modern version of a medieval torture device: a chair that supposedly converted to a bed, though I think sleeping on a mattress on the floor, or even just the bare floor itself, might have been more comfortable.  There were definitely some mornings when I would have killed for a good night’s sleep or the opportunity for a long soak in a hot bath, but sleeping in “the bay” with 3 other patients including 1 baby meant that my nights were often disturbed.  M’s cubicle contained 1 of the 2 sinks for the 4 beds, which meant that one notable night, I had doctors, nurses and parents trooping through past M’s bed in a steady stream during the early hours as they needed to wash or sanitise hands and access sterile gloves.

The long-term gastro ward is shockingly out-dated and the facilities don’t meet the needs of the patients or their parents.  Unbelievably there is just one bathroom for 16 beds and only 2 other toilet cubicles, so you were constantly having to keep an eye on the bathroom to make sure you could dash in there before it was in use again.  Given this was the location of the height chart too, you can imagine just how in demand that single room was.

What did you eat when you were there? (I can only imagine this expense adding up if you were buying all your own meals)

Courtesy of mirror.co.uk

Courtesy of mirror.co.uk

The expense certainly did add up as I had to provide all food and drink for myself during the admission.  The small kitchen had a fridge which parents were able to keep food in, but I often found myself heading out each day to get some fresh air as well as my meals for the day.  There was also a microwave and crockery and cutlery, so that did make having a hot meal a little easier.  I kept some bread and crackers for breakfast and then would go out to buy sandwiches, ready meals or other snacks for the rest of the day.  There are several supermarkets in the vicinity, so there was reasonable choice, though the largest shop is a Waitrose, which definitely didn’t help with the cost.

I didn’t really eat out too much, though I took G out for meals whilst she and Mike visited and I treated myself to the odd coffee or hot chocolate mid-morning from one of the nearby coffee shops.  I also had a really lovely dinner out with one of my fellow Mums on the ward.  We headed across the road from the hospital to a small Italian restaurant and enjoyed some delicious food, great conversation and a small glass of wine each, whilst the boys were under the watchful care of the nurses!

How did you pass time? – Surely M didn’t need you every second of the day?

The first few days M was reluctant to let me out of his sight for long, especially when he was struggling to cope with the effects of the bowel prep on his system.  He understood that I needed to go out and get something to eat so that I didn’t make myself ill, but I would bring the food back onto the ward to eat at his bedside.  He didn’t necessarily engage with me for most of that time, preferring to be plugged into the TV or playing his tablet or DS, but my presence was very much required.  I took a supply of magazines, books and various puzzle books with me as well as my laptop, so I was able to entertain myself whilst he was absorbed in what he was watching.

teaOnce he started going to school, I spent my time off the hospital ward as much as possible, taking walks in the local area and getting some fresh air or doing the more mundane chores of laundry or tidying up our very small bed area.  I was lucky enough to be able to arrange to meet up with several of the lovely FABED Mums whilst we were there too as their children came in for various appointments or procedures.  It was great to actually meet, sit down and chat with some of these folks who’ve been giving support over the last 4 years and to finally put faces to names.

Did you have opportunities to have ‘a break’?

My only breaks were relatively short ones when M was in school or the evening he went to Scouts.  Some parents lived close enough to be able to go home or even into work during the day, but being over 2 hours away from London made that impossible for me.  The 2 Saturdays when Mike visited, he spent most of his time with M, so G and I could go out and have some quality time together.  We went to a coffee shop for elevenses both weeks, I took her out for lunch the first week and the 3 of us went out for dinner both evenings before they headed home.  We were lucky that there are restaurants nearby that do gluten- and dairy-free food options, so eating out with G proved to be easy to do.  But that was it.  No other breaks for me as it was, all things considered, a relatively short admission and I needed to be advocating M’s needs during our time there, something I just couldn’t take a break from.

How do you stay sane while there?

friendsWho said I did?!  Truthfully, my sanity remained as much in tact as it did thanks to amazing support from family and friends.  The folks who dropped me an email, sent me a text, popped something in the post for M or even arranged for a beautiful bouquet of flowers to turn up completely unexpectedly.  And that’s not even thinking about the wonderful Mums I met on ward, who were all there for varying lengths of stay, for vastly different reasons and who gave me an ear to bend and a shoulder to cry on when I needed them the most.  Believe it or not, we had a lot of fun in the evenings, sitting in the bay, comparing stories, sharing opinions of nurses and consultants, chatting about life and generally putting the world to rights.  Those friendships were made in the hardest of times and the strangest of situations, but are worth more than their weight in gold.  I met amazing parents who are facing much bigger challenges than we have to cope with and yet go about everyday with a smile and a kind word for everyone they meet.  We all had our down days when we needed the support of those around us and I can’t think of a nicer bunch of people to have been through that experience with (Rhys, Lauren, Caroline – you know who you are and thank you!)

Kracklecorn? What’s Kracklecorn?

Courtesy of gruffalo.com

Courtesy of gruffalo.com

 

 

Kracklecorn! Why, didn’t you know?

(with apologies to Julia Donaldson and the Gruffalo)

 

 

 

20141002_201822No?  Well neither did I until we travelled to London for M’s September GOSH appointment. I had left Mike to keep an eye on the children whilst I fought my way to the train’s buffet car for a much-needed injection of caffeine.  As I waited for my latte to be made, I spotted an attractive looking blue and white striped bag hidden amongst the more familiar packs of crisps and bars of chocolate and, intrigued as to what it was, I asked if I could look at the packet and ran my experienced eye over the extremely short list of ingredients.  I was thrilled to discover that the four ingredients (maize corn, rapeseed oil, cane sugar and sea salt) were all 100% safe for both G and M and naturally snapped up a bag of Kracklecorn for them to taste, with fingers tightly crossed that I might just have found another M-friendly snack for them to enjoy.

I think they broke records in devouring this popcorn treat and Mike and I barely managed to sneak even the tiniest of morsels to taste ourselves.  I’m not a fan of salted popcorn usually, but the balance of the not-too-sweet and the not-too-salty was spot on and even I found little to fault with this snack.  As the children begged for more, I had visions of having to buy out all the stock on the train and heave my haul around London, so imagine my delight – and Mike’s relief – when I discovered that it is readily available at most Tesco stores, including, thank goodness, those a stone’s throw from our front door.

For those of you yet to discover this brand, Kracklecorn is hand-made by Portlebay Popcorn in their factory, lovingly known as “The Poppery” in Devon and is available in a huge range of flavours, the like of which I’ve never seen before.  Unfortunately, the “Classic” sweet and salty is the only one suitable for my pair, but I can assure you that the “Lemon Sherbet” and “Crispy Bacon and Maple Syrup” flavours are equally delicious and unequivocally moreish – a fact that Mike cannot dispute as we fought over who would finish the bag of lemon sherbet popcorn on Saturday night.

20141002_201805I contacted Portlebay Popcorn to ask for some samples to review and when this parcel arrived on our doorstep, G and M thought all their Christmases had come at once.  I asked for their thoughts as they munched their way through yet another bag and the comments “delicious“, “amazing” and “10/10” were just about audible as they crammed more popcorn in. Despite the best efforts of 2 small children in the 7Y2D household in the run up to Christmas, we still have several packs of Portlebay Popcorn waiting to be enjoyed and the question has been what to do with them all as G has been left to devour them on her own whilst M is on his elemental diet.  I found the solution today.

popcornToday is the perfect day to be offering my very first blog competition as it is, believe it or not, National Popcorn Day, though admittedly this is celebrated mostly in the USA where they consume an unbelievable quantity of this sweet treat each year.  Thanks to the generosity of Portlebay, I am offering 2 lovely readers the opportunity to win 3 bags each of the “Classic” Kracklecorn to enjoy.  Simply enter via the link and I wish you all the very best of luck and happy munching!

a Rafflecopter giveaway

*Disclaimer – We were sent packs of Portlebay Popcorn for the purpose of an independent review and the views expressed are entirely my own and those of G and M.

7 things to do in hospital when you’re 8 (& 3/4)

Two weeks in hospital is long enough to challenge the sanity of any adult, let alone that of an 8-year-old who is used to being on the go all the time.  As well as his daily visits to the hospital school, M was fortunate enough to have a number of other activities to take part in, which helped wile away the ever-lengthening hours.  I don’t know how many of these same opportunities, or others like them, are available at children’s hospitals across the country, but this is a selection of some of those M chose to do during his stay at GOSH:

Pets as Therapy20141209_131336We were lucky enough to have 3 separate visits from 2 of the amazing “Pets as Therapy” dogs, Molly and Woof.  These charming animals are specially chosen for their gentle manner and make regular visits into hospitals, care homes and special needs schools to bring a great deal of comfort and love to those in the greatest of need.  I wrote a blog post not so long ago about just how much calm and comfort M draws from our cats at home and I saw the same things happening as he was able to pet and cuddle both dogs in his own space in hospital.  G was lucky enough to also have the chance to meet and fuss Molly as she visited on both Saturdays whilst Mike and G were visiting, and both children were encouraged to offer her treats for her patient behaviour when she was with them.

 

ScoutsscoutsThe visit to the 17th Holborn Scouts and Guides at Great Ormond Street Hospital was one of the highlights of M’s last hospital stay in 2013 and since finding out he was due another admission, he had talked of little else.  His biggest disappointment was that he was admitted on a Wednesday as Scouts meet every Tuesday evening and he had to wait a whole week before he could go again. During the evening, they provide a range of different crafts and games which are tailored for the differing ages and needs of the children attending that week and even reward regular attendance, an important boost for those children who are there on long-term admissions.  Sadly, M only managed to make one meeting again this year, but is already asking when he can go to Scouts again!

 

Courtesy of gosh.nhs.uk

Courtesy of gosh.nhs.uk

Saturday Club – Every Saturday afternoon, the activity centre (located next door to the school) is opened to patients and their siblings and friends for a couple of hours of crafts, games and some much-needed time together, away from the constraints of the ward.  On our first Saturday in hospital, M wasn’t keen on venturing too far from his bed, but the arrival of 2 of the Saturday club play volunteers, who engaged him and G in some riotous games of “Extreme Uno” as well as giant snakes and ladders, convinced him to change his mind.  By week 2, both G and M were chomping at the bit to join in the fun and whilst the staff there helped my 2 celebrate G’s 11th birthday with some rather nifty face-painting, an elegant birthday crown and Christmas crafts galore, Mike and I were able to escape for a sneaky 45 minute catch-up over coffee and cake in the hospital restaurant.

 

Courtesy of scholastic.co.uk

Courtesy of scholastic.co.uk

ReadWell book trolley – This was a treat we almost missed during our first week as the trolley came round as we were enjoying the ballet at the Royal Opera House, but thanks to some near-perfect timing, we stepped out of the lift just as the trolley was about to leave the ward.  M was able to choose from the wide selection of books displayed on the trolley and took great pleasure in being able to spend some time before deciding on an author we had not come across before.  To his absolute delight, not only did he have a free choice of books, but he also got to keep the books he picked out and he has enjoyed reading them since we got back home.  M also had the chance to create his own story with one of the ReadWell workers, who came into the school and acted as scribe as he weaved his adventurous tale of aliens visiting earth.

 

20141214_105928Ward Playroom – Whilst this was not the biggest room in the world, it held a vast array of games and activities to entertain the most particular of children.  M played on the Wii, found new board games to master and was able to borrow a DVD player and DVDs to watch over the weekends.  We made Christmas decorations, painted pictures, experimented with creating circuits with a science kit and M even decorated a ceramic money-box as part of his Christmas present to G.  20141214_105916

 

Courtesy of magicfree,net

Courtesy of magicfree,net

Magic – As well as a fleeting hello to the Clown doctors as we passed them in the ward corridor, one afternoon was brightened by the promise of a visiting magician.  M sat enthralled with a small group of his new hospital friends as this talented gentleman performed one awe-inspiring illusion after another.  He invited both children and parents alike to participate in some of the tricks and wowed us with his skills.  He listened as the children asked him questions about what he was doing and even watched M perform a rope trick of his very own.  My Dynamo-wannabee loved every moment of the show and dissected the tricks at length afterwards, trying to work out the secret of how they’d be done.

 

20141219_184138Post – Last, but not least is an activity that had nothing to do with GOSH itself, but everything to do with the amazingly thoughtful family and friends who were determined to bring a little cheer to our dreary corner of the long-term gastro ward.  Messages came from around the world – Canada, Madeira and across the UK – and each was special in its own way.  M received get well cards, postcards, books, stickers, games and other gifts that were guaranteed to entertain him day or night.  We decorated his bed space with the cards and added a Christmasy feel with the decorations that we had made in the playroom.  Knowing that people were thinking of us, loving us and sending us get well wishes and prayers sustained us both during the most difficult moments of the admission and brought some much-needed sunshine on the darkest days.   From the Christmas card from M’s class at school, to 2 pages of messages from Mike’s cousin and her friends and colleagues in Calgary; from cards and presents from our friends at church, to a card from the lovely members of my choir; and the 2 extra-special gifts of Angry Birds Jenga from our fabulous FABED family and signed photos and scrubs for both G and M from Holby City, courtesy of Simon Harper, my man at the BBC; all the mail was gratefully received and enjoyed hugely by us both.

                        20141220_193939

The 3rd and final step

M and his tube at GOSH

M and his tube at GOSH

With steps 1 and 2 complete, we were now onto the third step, the one which is going to have the biggest impact on M’s life for the next few months.  NG-tube in place, dis-impaction done and pellet study under way, it was now time to move M to an “elemental” diet, one which sees all foods removed from his diet and replaced by a nutritionally complete feed that consists of amino acids, carbohydrates, fats, vitamins and minerals.  The ideal would be for M to drink the 1.8 litres of this feed that he needs each day to have the right amount of calories and nutrients for his age, weight and height, but I knew we had no chance of getting him to do that.  Not only is he a reluctant drinker at the best of times, meaning it would be nigh impossible to get nearly 2 litres of liquid into him on a daily basis, but the feed is truly revolting to taste and even adding generous quantities of approved flavouring was never going to be enough to convince him to let more than a minimal amount pass his lips.  The only alternative was to feed him via his NG-tube, which meant an intensive few days in hospital for us as we worked out how best to give the feeds, the timings and rates that he could tolerate and I was trained on how to manage his tube.

The original plan proposed by the dietitians was that M receive six 300mls feeds a day via the gravity-feeding method, which meant that we would attach a large syringe to the end of his tube and gradually add the 300mls over the duration of the feed to ensure he took the full amount.  The principle of gravity feeding is that you can adjust the speed of the feed as the flow of the liquid is driven by the height of the syringe and the effect of gravity:  the higher the syringe, the faster the flow. The dietitian was keen that the feed be given over around 20 minutes, but it quickly became obvious that this just wasn’t going to be a method that would suit M.  Within 5 minutes of his very first feed starting, he turned pale and grey and complained that his stomach was hurting. The nurse giving the feed adjusted how high the syringe was held, but no matter how the syringe was positioned, things didn’t get better and by feed number 2, the nurses were adamant that this just wasn’t going to work for him, something I wholeheartedly agreed with.  At this point, we were only giving him 200mls instead of the full 300mls, but even that was proving too much for M’s sensitive digestion, so the dietitian finally had to agree to what the nurses were telling her and everything was changed yet again.

M's rather snazzy new pump

M’s rather snazzy new pump

Our new routine saw the feed mixed to a higher concentration, meaning that we only needed to get 1.5 litres into him a day and we were introduced to the wonders of a pump.  The pump means that the rate of giving the feed can be at a speed that best suits M and can easily be tweaked as each individual situation requires.  There was a lot to learn in the few days we had as I needed to know and be confident in how to check that his tube was correctly positioned, what to do if it appeared to have moved, how to prepare the elemental feeds and how to attach and properly operate the pump.  There was also the added complexity that the pumps used on ward by GOSH were not the same as the one approved in our community and whilst the principle was the same, the processes were slightly different.  However, by the time discharge finally happened, I was as au fait with this new part of our life as I could hope to be, felt that we could cope at home and, more crucially, had enough medical supplies to see us through the next few days.

M and his tube at home

M and his tube at home

Since that first day, now over a month ago, that original regime has been changed and tweaked more times that I care to imagine.  The suggestion of 6 feeds being administered at separate 30 minutes periods throughout the day were impossible for M to manage as he wasn’t able to tolerate the 250mls over either the initial proposed 30 minutes, nor our second attempt of an hour.  It also quickly proved impractical as any issues with the placement of the tube would take at least 20 minutes to resolve and that was time that we couldn’t expect the school to give him as he doesn’t get any individual support.  We soon realised that M wasn’t coping either physically or emotionally with the constant feeding and we have now settled on a routine that seems to work for everyone concerned.  His first feed is a 1 litre one starting at around 6.30am, which is given slowly enough to avoid too many tummy aches or occurrences of reflux and which lasts until the end of lunch-time.  The pump is disconnected at that point and M is able to enjoy an afternoon free of the encumbrance of his pump whilst at school.  The final 500mls feed begins between 4pm and 4.30pm and takes us all the way through to bedtime.

This is the routine that we will be living with for the next month or so and then the task of food reintroduction will begin.  As our local dietetics team has refused to be involved in M’s care, we will be working with the dietitians from GOSH to work out a detailed approach to trialling foods and the order we try them in.  The elemental feeding via NG-tube will continue alongside these food challenges until we have identified enough safe foods for M to eat and get all the calories and nutrients he needs to be healthy.  It’s not going to be an easy or quick task to complete, indeed there is a long and arduous road ahead, but it should be one that leads to more answers for M’s health than we’ve ever had before.

School – the hospital way

One of my favourite memories of our pre-admission waiting time is when I asked M to tell my Mum what was going to happen once he was in hospital.  I had, of course, expected him to explain, in depth, all he knew about the NG-tube and the pellet study, but roared with laughter when he said, in a small voice lacking in any great enthusiasm, “…hospital school…”

indexThe first few days of our stay were dominated by the administration of  the huge amounts of powerful laxatives and M felt so unwell that he refused to move from his bed.  By the end of that first Sunday, however, the tedium of not being allowed off hospital premises had taken its toll and he was keen to head off to school on Monday morning.  The hospital school accepts that the children may not be able to attend a “full” day there and is happy for any child to be there for as long as they are able to manage.  Each day is split into 2 sessions:  10am to 12.30pm and 2pm to 3.30pm.  They cover the basics of maths, literacy and science, but also throw in other subjects such as IT, art and even PE.

indexI discussed with the teacher there all of M’s needs concerning his dyspraxia and dyslexia and we talked about all he’d been learning so far at his home school.  He was one of just 4 children in the Key Stage 2 group during his admission and was able to have a huge amount of one-to-one teaching as there were 4 teachers able to work with the group.  They tackled his lack of enthusiasm for literacy by signing him on to the “Bug Club“, an on-line learning resource which tested his reading comprehension skills.  Each time he was able to read a new passage and answer the questions correctly about what he had read, he received a virtual sticker and was moved on to the next text.  He was set up with his own username and password to monitor the development he was making in class and what’s even better is that they have given us all the details needed for continuing with it at home.

M's amazing chocolate Christmas creation

M’s amazing chocolate Christmas creation

Every morning, M was keen to get up, get ready and get down to the classroom for the start of the school day.  I have never seen him so keen to arrive at school and start working! He had a busy week there and he enjoyed every single moment of it.  From History with the Victoria and Albert Museum to Cookery with the Executive Head Chef of the Hilton Hotel, it was a school week unlike any other.  He even took part in the school’s carol concert in the GOSH chapel, where he read part of the Christmas story.  It proved to be a great distraction from everything else that was going on medically and an amazing opportunity for those children who have to stay in hospital.