Tag Archives: friends

“Muuummm, what’s for tea tonight?”

Oh how this resonates..

If your family is anything like mine, that question usually comes just as you’re struggling through the door: with house keys in one hand, car key gripped firmly between your teeth, handbag on one arm, cello on your back, mobile phone pressed to your ear as you attempt to talk to the dietitian/consultant/other healthcare provider, who’s asking if now is a good time to talk and you can’t say no as you’ve been trying to contact them urgently for at least the last 3 days and who knows when they might call again; plus the school bag(s)/shopping bag(s)/extraneous bag(s)* (*delete as appropriate) you’ve picked up along the way are weighing down your other side and threatening to upset the delicate balance you’ve perfected in your struggle to cover the 100 yards or less from your car to the house. Meanwhile, your curious offspring are waltzing in behind you, or possibly squeezing past you, through the already impossibly small and too-narrow-to-negotiate-safely doorway, bearing no more than a half-empty water bottle and their coat, worn superhero style to leave their hands free to carry absolutely nothing else at all. And just as you think you’ve achieved it and managed to get everything safely inside, they open their mouth and ask that unavoidably fraught dinner-question and the peace shatters and your world tumbles down around your ears. Does any of that sound familiar or is it just my household?

For M at the moment, my answer is fairly standard, although he adds his own unique twist by asking if dinner will be “chicken with rice and cucumber” or perhaps “rice and chicken with a side of cucumber”? For a while, when he was still 100% elemental, he would even ask if he could have “air-sticks” – “like bread sticks you see, but without the bread” – showing that the ability to laugh his way through this experience is his greatest strength in beating this disease. I have become a self-confessed expert in cooking with 3 principle ingredients – rice, chicken and cucumber – and the bonus extras of herbs, rapeseed oil and sugar. Rice has been broadened to include its derivatives and the inclusion of rice milk, rice cream and rice pops (as long as they’re gluten-free) has added to my ever-increasing repertoire of 3-ingredient recipes.

Rice-flour sugar cookies

In the past few weeks, as well as my fall-back favourites of roast or grilled chicken with plain boiled rice, I have also perfected deep-fried savoury rice balls, chicken nuggets, chicken and cucumber curry, fried rice, chicken stir-fry, rice-flour sugar cookies and rice pudding. My Mum has also made M a chicken breast stuffed with rice and cucumber, courtesy of the inspiration and some nifty hints suggested by our hairdresser and which was an instant hit with our young diner. It’s surprising just how many different recipes you can create with just a few ingredients and there’s even a few more that I’m hoping to try out in the coming weeks. What started out as a daunting challenge to entice M’s appetite and encourage him to once again eat whilst navigating the tricky world of identifying his food allergies, has become yet another success story in our household.

My victory with such a limited range of ingredients has been all the sweeter given the recent UK news story of the letter sent to the Daily Telegraph newspaper by over 100 top chefs and restauranteurs condemning recent EU legislation requiring restaurants to provide information about which of the top 14 allergens the dishes on their menus contain. It was never a requirement that they did not cook with these ingredients, but rather that they should be able to inform diners of what the food prepared contains, with the knowledge and pride in their ingredients that I would expect from any talented chef. Whilst widely welcomed by those of us in the allergy-world as a step towards helping us make informed decisions about eating out, these chefs warned that such requirements would harm “…the spontaneity, creativity and innovation restaurants and others in the industry have enjoyed up until now.”

Like so many others in my situation, I wrote a response on the Telegraph website, pointing out that this legislation will help me to protect my children and give them experiences that will ensure their continued health and enjoyment, I do not deny that it’s up to me (and they as they grow older) to ask about allergens, but there’s no point asking these questions if the restaurants, waiting staff or chefs cannot provide the information needed and the lack of understanding about cross-contamination risks is sadly common across the food industry.

Our experience last summer in Disney proved that this type of requirement does not need to be restrictive as excellent allergen information was readily available and nearly everywhere we ate produced meals for G and M that rivalled those being served to any other customer there with a “normal” diet. The chefs were knowledgable, came to our table to discuss their allergy needs and made the effort to find out what my challenging duo would like to eat – excellent service all done with a smile.

The big challenge was always to cook M-friendly food and these days that task has become even more testing. In my opinion, these rules will have little impact on spontaneity or ingenuity – try cooking or baking when you need to avoid wheat/gluten, egg, dairy, soya and potato to name but a few. Ingenuity comes when you try to prepare a meal that makes your child feel that they’re not missing out and that’s something I feel I’ve proved is possible, even for an amateur cook like me.

Big Bang Science Fair

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Last weekend we travelled to the Big Bang Science Fair at the NEC, Birmingham for a day full of science, maths and electronics fun. This isn’t an event we’ve been to before and I have to confess that it wouldn’t necessarily have been one that would have even registered in our consciousness before this year. Since last September, M has been attending a weekly Electronics Club after school and he loves every moment of it. During the past few months, he has learnt to program a Raspberry Pi, has become an expert with circuit boards, has written his own computer games using Scratch, built a crawling microbug and is now embarking on his latest project, a turning frog.

M getting hands on with one of the exhibits

Electronics has quickly developed into one of the great passions in M’s life and his recent birthday gifts reflected this new-found interest. From solar-powered robots to salt-water cars and night-sky constellations to a build-your-own robot arm, there’s been an awful lot of “building” going on in our household on a nightly basis. So, when the Electronics Club mentioned a possible day-trip to the NEC for the Big Bang Science Fair, M leapt at the chance and soon had the rest of the family on board too. We arrived at around 11am, split into small groups and started making our way around the huge number of exhibits that were there. There was a brief hiatus for lunch and then it was back to exploring the space before the show finished at 4.30pm.

G working hard to power the lightbulbs

Mike and M were in one group, whilst G and I were in another and we followed different paths around the hall. G loved her opportunity to generate enough power to light up some lightbulbs through pedal-power, whilst my favourite exhibit was playing musical vegetables, thanks to a piece of music software and some clever wiring. M, on the other hand, has been hard pressed to choose his favourite activity, although he is very proud of his memento of a rock-hard silicone glove, created by mixing some chemicals together (don’t ask me which, neither Mike or M can remember!). He also become the subject of discussion with some university students working there, when a medical student spotted his NG-tube and called her colleagues over as they had never seen a tube in situ before. Mike was also impressed that one of the nurses working on the ambulance display had not only heard of EGID, but also knew a little about it.

It was a fantastic and fascinating day out and M has already requested a repeat visit next year, with just one proviso: that we get there right at the start of the day in the hope those extra couple of hours might enable us to see everything there is to see.

“Magic never dies. It merely fades away.”

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This time last week one of my heroes died. I was saddened to hear that Discworld-creator and Alzheimer’s advocate, author Sir Terry Pratchett OBE had sadly lost his battle against this unrelenting disease and I was left with the sense that our world had become just a little less colourful as a result. With typical Pratchett-esque humour, a series of tweets, written in his own incomparable style, announced his passing, taking a lead from one of my favourite of his characters, Death:

AT LAST, SIR TERRY, WE MUST WALK TOGETHER.

— Terry Pratchett 🖤 🤍 (@terryandrob) March 12, 2015

Terry took Death’s arm and followed him through the doors and on to the black desert under the endless night.

— Terry Pratchett 🖤 🤍 (@terryandrob) March 12, 2015

The End.

— Terry Pratchett 🖤 🤍 (@terryandrob) March 12, 2015

I first discovered the Discworld and its diverse cast of characters in the late 1980s and quickly found myself reading, and re-reading, his books as I waited, often impatiently, for the next one to be published. My Dad and I shared a love for the Discworld and my Mum often commented that she knew when either of us was reading one of Pratchett’s books as they caused us both to laugh out loud, something no other author had ever done. Our joint appreciation for Pratchett’s fantasy world is one of my fondest memories and even now, I find myself transported back 20 years, to times spent sharing our newest discoveries in his latest novel whenever I revisit these tales these days.

It’s difficult to explain what made Terry Pratchett’s books just so un-put-downable to me. His clever play on words frequently made me laugh out loud – who can forget Twoflowers’ explanation of an “Inn-sewer-ants-polly-sea” in “The Colour of Magic“? His unashamed use of characters or plots from other authors was delightfully skilled – and the 3 Witches in Shakespeare’s Macbeth were not a patch on Granny Weatherwax, Nanny Ogg and naive Magrat Garlick in “Wyrd Sisters“. His sense of humour was evident in almost every word he wrote. I loved nothing more than waiting to see the plot twists and turns that each new storyline would take and spotting the sometimes obvious, sometimes more oblique references to popular culture. And in every step of my adult life; be it at university, in the work-place, waiting at the school gates or in our EGID world, he has oft become the common bond that starts a friendship or fills a gap in the conversation.

In the days following his death, Terry Pratchett’s fans have given him tribute by taking ideas from his books to create a fitting memorial. The first was a petition asking Death to “Reinstate Terry Pratchett” because Terry himself said that “There are times in life when people must know when not to let go. Balloons are designed to teach small children this” and already nearly 30,000 people have added their names to this request.

The second took an idea from his 33rd Discworld novel, “Going Postal”, which saw the advent of a communication system, somewhat comparable to the internet. When a key character dies, a message bearing his name is sent down the lines on an unending journey to ensure that it is kept alive indefinitely because “A man is not dead while his name is still spoken.” Keen Pratchett fans have developed code that is being embedded on websites to ensure that his name is similarly forever encoded on the internet.

In the past few days, I have started to revisit his books, many of which reside on my book-shelves, and have found myself to be once again amongst old, familiar friends. The humour never fades and with each reading, I discover a small nuance that I hadn’t noticed before. Rincewind, Granny Weatherwax, Captain Vimes and the Discworld have been a part of my life for nearly 30 years and I look forward to introducing both G and M to these adventures in the not-too-distant future.

“No one is actually dead until the ripples they cause in the world die away…”

– Reaper Man

Photographic evidence

Piece of cake

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These photos are of the supplies I needed to create this year’s birthday cake masterpiece for Master M as, after all, this had to be a birthday cake like no other I’ve ever baked before. In the same way that I had discussed my plans for the food we would serve at their Cluedo party with M, we sat together to talk about the various options for his birthday cake. I could bake a “normal” cake for him to give to his friends, I could use polystyrene dummy cakes to create an authentic-looking, but totally M-friendly cake or we could try something completely different. A friend had suggested using small bottles of 7-up to create a tiered cake and then giving every party guest a bottle to take home, which I thought an inspired idea as it’s one of the few things M has been able to enjoy since his NG-tube was passed, but M disagreed. He preferred the idea of the polystyrene “fake” cakes and we headed off to the shops over half-term to source the cakes, decide how many tiers he wanted and get all the art supplies I might need.

Every year I try to create birthday cakes that either echo the themes of the parties themselves, be that mini-golf, magic or minions; or that are innovative and something the children have never seen before, such as last year’s pinata cake for G. This year’s Cluedo theme offered me a wealth of ideas and I just needed to decide how to put them into action. I settled on a black base layer and ever-grateful to avoid the nightmare of icing a free-from cake, attacked our 3 tiers with a sturdy brush and bottle of black paint. “Cakes” fully covered, I liberally sprinkled some silver glitter over them all before the paint dried, positioned the silver 9 on the top and added an emerald green ribbon trim for that touch of old-fashioned glamour and to fit with M’s role as party host, “Captain Emerald”. I stuck the tiers together using PVA glue and then inserted some wooden skewers, just to make sure there was no chance the cake would fall apart before the day itself.

Next came the fun part of adding the decorations. I had previously printed out silhouettes to use for the characters and images for each of the murder weapons and had a number of them left-over after I had prepared the cards for the party itself. Choosing carefully, I glued the weapons to the bottom layer and a selection of characters to the middle layer, making sure I included the image of G’s character, “Countess Pearl”. My final step was to stick Captain Emerald’s silhouette to a piece of black card that I had already covered generously with more silver glitter and added this, leaning against the top-tier of the cake, before leaving it all to dry.

M’s cake sorted, I moved on to the preparation of a cake for G. Much as I had enjoyed exploring the “crafts” side of my personality, this was the moment I’d been waiting for since Christmas. Not so much the baking of a cake, though I love decorating birthday cakes to wow my children, but more because I finally got to use the best Christmas present I had received and one that was completely unexpected. I’ve been drooling over the KitchenAid food mixers for years, imagining one gracing my kitchen counters and last year started saving towards buying one of my own. To my delight, and absolute surprise, my wonderful Mum invested in a Ice-blue model as my Christmas/birthday present and it’s been sitting in the kitchen, taunting me daily with its absolute beauty, whilst I’ve waited for a chance to take it for a test-run. All I can say is thank goodness I needed to whip up 24 G-friendly cupcakes as well as the birthday cake itself as I flew through the first task and loved every moment spent doing it!

My birthday cake challenge was easier this year as although G has allergies of her own, I was able to use eggs, an ingredient I haven’t baked with in over 3 years. I used a simple gluten- and dairy-free recipe and then split the mixture between 5 bowls. Inspired by both the colourful characters in the Cluedo game and a recent episode of Great British Comic Relief Bake-Off, I added 5 different food colourings – 1 to each bowl – and then marbled the cake mix in the baking tins. As I waited for the cakes to bake, I turned to my trusty laptop to search out some ideas for how to decorate G’s Cluedo cake and settled on recreating the board itself out of icing. Working late into the early hours of Sunday morning to finish this final part of the party preparations and when I finally fell into my bed at around 3am, I was delighted with the end results.

The big reveal of my “showstopper” cakes was a huge success. Both G and M were thrilled with their cakes and liked the fact that even though they were completely different, they both fit our Cluedo theme perfectly. The cakes had pride of place at the centre of our Dessert buffet table and were a real talking point for children and parents alike. A job well done, though I’m not rushing to make 2 cakes for the same occasion again any time soon – my nerves just can’t take it!

A Whodunnit birthday!

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In the past 3 months, we’ve conquered Christmas, survived the return to school, managed the mysteries of the NG-tube and, most recently, started to tackle the tricky business of food re-introductions, Now it was time for my biggest challenge yet: M’s birthday party.

As G turned 11 back in December when M and I were in GOSH and we didn’t get to mark it in any great way, I wanted to make sure she could celebrate her day with her friends albeit belatedly. By the time Christmas had passed, the new year was in and we got round to making plans, half-term was fast approaching with M’s birthday hot on its heels. I tentatively suggested we threw a joint party, not at all sure what response I might get and was delighted when they leapt at the chance. Next came the trickier job of agreeing what to do and even though many ideas were bandied around, we struggled to come to a compromise that suited them both. With M keen to do LaserQuest or rock-climbing and G hankering after bowling, a final decision seemed impossible to reach until, in a rare moment of like-mindedness, they put their heads together and came up with the idea of a Cluedo-themed birthday party.

The first step was to set the scene for the murder of Mr Black by choosing enough character names, crime scenes and potential murder weapons to accommodate 16 children. We started with the original lists of the game itself and added to them, ending up with 10 weapons, 10 rooms and 16 characters, which G and M allocated to each of their friends in turn. I designed and then created the invitations to be handed out at school, inviting the children to join in the birthday celebrations for Captain M Emerald and Countess G Pearl.

Naturally, the finer details of exactly how the party would be run were left to me, but I loved the idea of a murder-mystery style party based on this classic board-game and have spent much of the last 4 weeks planning, preparing and perfecting each element of the day. The children had lots of ideas about what they wanted to do and we ended up with a series of games, activities and refreshments that would prove to keep the most picky of 11 year-old girls and most active of 9 year-old boys happy for 2 hours. Each game was attributed to one of our 16 characters, so the guests had the opportunity to test their skills with a Nerf gun at Colonel Mustard’s Shooting range or joined in the pottery painting classes run by Mrs Peacock and Lady Lilac. We wanted the children to still experience the original aim of the game and work out the who, where and how of the murder, so every activity they did gave them the opportunity to reveal more cards to eliminate suspects from their lists. This could be as simple as decorating a cupcake for Reverend Green’s church fundraiser to see 2 cards, or as revolting as delving deep into Mrs White’s giant trifle to pull out another one. Everybody had a chance to try their luck at each of the games and they all had a whale of a time.

As M is still very limited with the foods he is currently able to eat, I decided to avoid a traditional party tea and instead served a dessert buffet, which included pineapple and Foxes glacier mints, both of which are safe for him. He was also involved heavily in the decision-making about which cakes, biscuits and sweets would be on offer to his friends, which meant he was aware of what his friends would be eating and was happy to sit with them and chat as they all helped themselves to the selection of treats. The final party game was “Pass the revolver”, which saw the children completing forfeits to see the final 2 Cluedo cards before they had to reach their conclusions and share the results of their investigations. Nobody successfully worked out all 3 murder cards, though there was a small cohort who managed to work out 2 of the 3 elements correctly. We finished with the traditional rousing renditions of “Happy Birthday” and then sent our guests on their way. Both G and M loved every moment of their Cluedo birthday party and the text messages I’ve since received have assured me that their friends had a great time too. In the words of one of M’s friends, it was “the best birthday party EVER!“

Pump action

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Having sussed making the elemental feeds, and NGT management having quickly become second nature, our final challenge was to learn all about the small piece of equipment that is going to become a key member of our household for the next few months – the pump. M has the Flocare Infinity pump from Nutricia, which has proved to be easy to handle and quick to program. I was trained in just 40 minutes whilst M was still admitted at GOSH and even though it all felt rushed, it was actually all I needed and I was just about confident enough to go home with him 2 days later. Our excellent Nutricia nurse, from their local community nursing team, came out to train Mike the day after M was discharged and she has also held a training session at school to ensure key members of staff are up to speed with what they need to do during the school day.

The set-up is easy. The first thing we have to do is set the volume of the feed – either 1000mls or 500mls for M – and the rate in ml/h, which we set to 150 ml/h. The pump retains the information from the previous feed, so it is important to check that these 2 figures have been set correctly for the feed you’re giving. I then press the “info” button, which tells me the exact dosage that was given to M in his previous feed and clear this number from the pump’s memory. This records how much of the required volume has been given since the pump was started, so if you don’t take care to delete the previous information, you could find yourself giving a lot less than the required amount.

Courtesy of http://www.nutriciaflocare.com

The pump is then attached to the feed bottle via a feeding kit, which is a length of tube that joins the bottle to the NGT via the pump itself. We were provided with a small plastic stand, which holds the pump at the bottom with the bottle hanging upside down above it, firmly strapped in place. The feeding kit is attached to the top of the bottle, threaded around the pump stand, carefully avoiding getting it trapped between pump and stand, and then looped around the mechanism inside the pump. Before connecting the loose length of the feeding kit to the NGT. you need to fill the entire length of the feeding kit tube with the feed to make sure you’re not pumping air into your child. We were shown to do this using the “fill set” button, which runs at the fastest rate possible and takes seconds to fill up. Once this is done, it’s simply a case of attaching NGT to feeding kit tube and pressing start. All being well, the feed is now underway and, in an ideal world, you can leave the pump alone until the feed is finished.

However, reality is very different and you will quickly become attuned to the beeping of the pump alarm. It can and will beep for any number of reasons: there’s air in the tube, the tube has become kinked or blocked on the way into the pump mechanism, the tube between the pump and your child’s NGT has been kinked/blocked/sat on/folded tightly between your child’s fingers such that the formula has no place to go or sometimes, just because. Sometimes the alarm is easy to resolve, simply a case of stopping the pump, removing the air/blockage/kink and restarting; but sometimes no amount of jiggling wires, shaking formula bottles or removing everything from the bag and the stand will stop that alarm sounding every 5 minutes or less. We’ve even tried that old IT support favourite of switching it off and then on again and have had limited success in silencing the beeping for more than 5 minutes. Both G and M know how to switch the alarm off, but both are guilty of occasionally forgetting to make note of what fault featured on the digital display, leaving it to my superior Mummy detective skills to work out exactly what might have caused the problem that time round. Nevertheless, the odd mad beeping episode aside, the pump generally does what it should and copes in an admirable fashion with being bounced around on M’s back for 10 hours a day.

Courtesy of minionlovers.weebly.com

So this little purple pump has become our new best friend. Just like a favourite fashion accessory, we rarely leave the house without it or the trusty back-pack. M can do almost everything whilst wearing it and has become adept in the art of adapting to its very presence in his everyday routine. And whilst it is ever-present, we’ve learnt to have a laugh and have attributed it with its very own personality. Some of the lovely FABED family shared that naming the pump helped make the whole experience easier and more fun for their child and one Mum even said that the pump reminded them of a minion. This latter idea made all of us smile because we knew instantly what she was referring to: the incessant beeping of the alarm which is hard to distinguish from the “Bee-do bee-do” heard from the Fireman minion who helps put out Gru’s office fire. Of course, even though M’s pump bears more resemblance to one of the evil purple minions from Despicable Me 2, bent on a path of destruction, it’s hard work and support in providing M with the means to have the nutrition he needs is far more comparable to their loveable yellow counterparts.

Disclaimer: I am not a medical expert and this blog does not constitute medical advice. I have detailed how we have been taught to run M’s pump by the professionals involved in his care. Please note that any questions concerning a feeding pump and the associated kit should always be directed to your medical team.

A Super Tubie of my Own

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Courtesy of feedingtubeawareness.com

This week is #feedingtubeawarenessweek, a week that our family is embracing with every ounce of our being this year. Last year I wrote about our 2 previously brief encounters with a NG-tube, knowing that there was an ever-present chance that M might end up needing one at some as-yet-unspecified point in the future. Just 12 months on and the state of M’s health due to his EGID means that a NG-tube is now part of our everyday family life. The aim of the campaign this year is to dispel the myths and misconceptions that surround tube feeding and to show that adults and children can live their lives and have fun with the tube in place. A tube is often the path to improved health and development and should be embraced as such by us all. Their theme is “The truth about tube feeding”.

M’s friends and class-mates have accepted it as very much part of who M is and have been amazing at looking out for him at every turn without leaving him out of their games. One friend was so intrigued by the tube and how it worked that I spotted him peering up M’s nostril to see where the tube went, just before M opened his mouth wide and pointed out that the tube could also be seen at the back of his throat – how I love the honest interest of 9-year old boys! He was more bothered by the Year 3 children at school, who he often caught staring at his tube, but he developed his own coping mechanisms and when asked what “that” was – a question often accompanied by a finger pointing towards his nose – he started telling them it was “…nothing, but a mere figment of your imagination…”, before walking off, leaving in his wake a stream of very confused 7- and 8-year olds.

In light of all this, I was chatting to M this afternoon about his tube and people’s attitudes towards it. I was interested to find out how he feels about strangers staring and what response he would want them to give instead. His reply fascinated me as it expressed clearly how much more awareness is needed about tube-feeding and the impact had on those living with a tube. He didn’t mind the idea of people asking me about his tube and the reasons for it, but he isn’t yet comfortable with having to deal with those questions himself. However, the most telling statement was this one:

“Adults should know not to stare, but sometimes they do and I don’t know why”

and that, in turn, made me think about how I feel about M and his NG-tube. Hospital, home and support groups all exist within a protective bubble, where nothing is unusual and normal is defined by each individual and their particular needs. It’s only when you go out into the outside world that you suddenly come up against opinion and prejudice and the harsher side of life; against people who don’t understand that this tube is bringing nutrition and healing to my child and who find themselves unable to pull their eyes away from the tube stuck to the side of his small face.

Courtesy of timemanagementninja.com

We’ve been lucky and haven’t experienced negative comments or unwanted interest. Yes, I’ve seen the intrigued looks or double-takes as passers-by register his tube, and I’ve received the sympathetic smiles from other parents as they’ve watched me attaching his pump or silencing the alarm, but nothing more. We’ve been fortunate to have the most amazing support from the families and friends who are part of FABED, many of whom have been in the same boat at one time or another and know how it feels to be suddenly following a slightly different path through life than the one we thought we were on.

Today, I found an article written by Traci Nagy, the founder of the Feeding Tube Awareness Foundation, in 2013 to discuss the importance of feeding tube awareness and thought I’d share with you this excerpt that sums up for me just why awareness matters so much to families like mine:

“It matters that people understand something about feeding tubes other than Terry Schiavo or that silly KE diet. It matters that they know there are well over 200 medical conditions and diseases that can lead children to need extra nutritional support through tube feeding. It matters that they realize that these conditions aren’t always visible, and that looking “normal” doesn’t mean there isn’t more going on inside. It matters that they know that the feeding tube can be thought of like any other medical device in that it helps you do what you can’t do on your own…for now. It matters that they understand that the benefit is that children get the nutrition and hydration they need to grow, develop and thrive.”

20150208_181917 So, this week we’re the family proudly sporting the “I love a Tubie” t-shirts accompanied by the live-wire that is our very own “Super Tubie”. Stop and say hello and don’t be afraid to ask me questions, but let M get on with whatever he’s doing. We’re hoping to raise awareness and are happy to start in our community, after all, we know that every journey begins with a single step.

How to survive a hospital stay – the Parents Edition

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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

No, 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

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.

Once 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?

Who 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!)