Tag Archives: ill health

Because #livinginfear is not just about the allergies

I wrote yesterday about the #livinginfear campaign and started thinking about what that really means to me. I quickly realised that #livinginfear is not what I want for M or, indeed, for G. It is so important that they are both aware of their allergies and that M, in particular, could suffer adverse reactions to the foods he eats. They must take on responsibility for their own health when away from home and have an understanding about what they eat and what they have to avoid. They need to know how to deal with mild reactions and how to communicate their needs to the people around them, especially when in new situations, or when Mike and I are not there to speak up on their behalf. After our experience with the sweet potato trials, they now know that there could be other, more serious reactions that M’s not experienced before and that they could be frightening. Most critically, I need to teach them how to respond calmly should those reactions occur.

However, the most important thing is this: that my children are still children and whilst living with a chronic illness has forced them both to grow up a little faster than their friends and peers, I don’t want them shouldering adult worries or concerns, or feeling weighed down with fears that may never be realised. Until the point when they reach their majority, I want my children to laugh, play and simply live each day as children, trusting that Mike and I will always be there supporting them, ready to catch them when they fall.

The truth about #livinginfear for us is that it is my burden to bear and is about more that just the potential for serious allergic reactions. My fear is not even about M possibly suffering from anaphylaxis one day as, although the prospect of facing that is daunting, I trust that my parental instincts and ability to stay calm under pressure would get me through that most difficult of experiences.

No, that weekend highlighted for me what my true and biggest fear about his allergies and his health really is: that I will not be believed…that I will become “that” parent…and that the health professionals involved in my child’s care will doubt what I say, thinking I’m causing a fuss about something that is simply not true. The years spent chasing a diagnosis despite everything the doctors were telling us have taken their toll on my self-belief. I second guess myself at every turn. I discuss and dissect and deliberate my every waking thought about M with Mike to check that I’m not going mad, that he, at least, understands where I’m coming from and that I’m not being unreasonable or over-reacting to the situation.

Nothing demonstrates that self-doubt more than the fact that I insisted we tried M on the sweet potato again the following day when Mike was there, just so he could see the reaction for himself and confirm that what I had seen, and M had experienced, was true. Despite my natural concerns that it could have been an anaphylactic reaction, I needed Mike to be an eye-witness to it too and I had our back-up plans in place, just in case his response was even worse that time round (fortunately it wasn’t). I didn’t want to put M through the terror and pain of the reaction again, what parent would, but I needed to be certain that I hadn’t imagined it to be more extreme than it actually was.

I know that my confidence has been shattered by the very people who should have been supporting me and my family every step along the way – the medical professionals we’ve encountered on our journey. I am no longer comfortable in trusting my gut instincts about M’s health, even though I have been proved right time after time after time; and that’s simply not acceptable.

Being a parent is a hard enough job when you have a happy, healthy child – there are no superheroes living in secret in my local community as far as I’m aware; but the burden quickly becomes overwhelming once you throw a chronic illness into the mix. I find myself not always being able to state my case clearly or argue M’s corner when it matters most and I lie awake worrying in the middle of the night that the treatment I’ve demanded may not be the best course of action, or whether there was anything I forgot to mention at the most recent appointment. I know myself to be a strong, intelligent woman and yet I find myself being instantly returned to my school days, with all the mixed emotions of being sent to see the Headmaster, the minute I find myself facing a consultant.

And I worry that G is getting lost in the chaos that is hospital stays and food allergies and medicines and diagnostic tests and the relentless need to monitor, record and report everything. As she approaches her SATs and the prospect of moving up to “big” school looms ever nearer, my firstborn is growing up fast and I wonder how our relationship will survive the inevitable traumas of her teenage years when my focus so often has to be on her younger brother. Time together is rare and incredibly precious and something we both need and enjoy because I’m fully aware that I’m not necessarily getting this parenting thing right.

So, raising awareness this week has to be not just with the general public, although that is undoubtedly critical to protect the allergy-sufferers around us, but within the medical community too. For most of us, you are our firefighters and the people we are forced to depend on in our darkest moments. We need you to be strong, focussed and the experts that we are not, BUT we also need you to be gentle, compassionate and understand that you are holding the future of our most precious possessions in your hands. Don’t dismiss our concerns, but believe that we know our children best and have an insight or opinion that is just as valid as your professional one. Don’t belittle our emotions, but be empathetic when they overcome us and we need a shoulder to cry on more than anything else in that moment. Be honest, but in the kindest way, knowing that your words have the power to break us when we least expect it. Most of all, understand that we are constantly #livinginfear about our children’s health and life, so they don’t have to.

Why #allergyawarenessweek is important

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This week is Allergy UK’s #allergyawarenessweek and their aim is to raise awareness of the serious, and sometimes severe, impact of allergies on everyday life. Their campaign #livinginfear has invited allergy sufferers to talk about the frightening side of allergies, not least of which are the statistics that show an astonishing lack of knowledge about how to deal with serious allergic reactions amongst the general public. Recent research carried out by Allergy UK shows that 44% of allergy sufferers in the UK are living in fear of a serious reaction, whilst 68% of the people surveyed wouldn’t know how to deal with a reaction; and this lack of public knowledge could be forcing sufferers into a life of fear and anxiety. This useful infographic published this week uses the acronym FEAR to educate us all on how to recognise, help and potentially save the life of someone struggling with a severe reaction:

Courtesy of Allergyuk.org

Whilst M’s allergies are extensive and challenging, I have always been extremely grateful that he has never suffered anaphylactic shock from anything he has eaten, although the question of whether he could experience one has floated at the back of my mind for quite some time. We were lucky enough to be able to bring home a training epi-pen after our visit to the Allergy UK annual conference in 2014, though other than a cursory look when it first came home, I have to confess it’s been gathering dust in a box on top of one of our kitchen cupboards since then. We’ve even gone as far as discussing, late at night, whether we should have an epi-pen on hand at home “just in case”, but I’m ashamed to admit that that is as far as we’ve got in actually doing something about it.

Courtesy of foodb.ca

However, less than a month ago that decision came back to haunt me and I learned unexpectedly just what the reality of the #livinginfear campaign could be like. We were trialling sweet potato with M, a previous favourite that we were desperately hoping would bring some much-needed variety to his meals. The first mouthful on that first Friday night had been eagerly received and much enjoyed by M and although the following day was a little more fraught on the toileting front than it had been for a long time, we hoped it was nothing more than a temporary blip to be overcome. We ploughed on with the food challenges and M had taken to waxing lyrical about how much he was looking forward to including sweet potato in his diet once again. He even asked how long it would be before he could enjoy a “whole baked potato” once again.

It was at the 3rd meal and the increase to 2 teaspoons of mashed sweet potato that things suddenly and rather dramatically went horribly wrong. Mike, rather typically, was out for the evening at a charity whisky-tasting event and it was just me and the children enjoying our evening meal at home. M tasted his mouthfuls of the mash before anything else and then got on with the rest of his dinner. He got no further than half-way through when he suddenly grabbed at his throat and started gulping down mouthfuls of his glass of rice milk. He complained that his tongue was stinging and itchy, his whole mouth was itching and it felt as if someone had grabbed his throat and was squeezing hard. Two glassfuls of milk later and a frantic phone-call to Mike about what was going on, things settled down and M was feeling a lot better.

I had spent those 20 minutes just about holding it all together, whilst running anxiously through all the possible scenarios in my head and trying to work out what I needed to do if things took a turn for the worse:

Option 1 – Jump into the car with both children, trying to keep as calm as possible and race to our local hospital, 20 minutes away and with no car parking options on site: I’d get there, but what if he stopped breathing in the car and I needed G to get involved, even if it was just by using my mobile to phone for back-up?
Option 2 – Dash off to one of several nearby friends who are also doctors and ask for their help: much quicker, but at least one of those was at the same event as Mike and who knew whether the others would be at home
Option 3 – Call 999 and wait anxiously for an ambulance to turn up, all the time acting as the proverbial duck (calm on the surface, but paddling furiously beneath the water): how long would it take for an ambulance to reach us? Could I keep both children calm at home as we waited? What would I do if M stopped breathing? What would I do with G if we needed to rush off to hospital?

We were lucky. The reaction passed, although the stinging pain in his mouth and throat and the sensation of his throat tightening returned at odd times over the next few days. Following a lengthy conversation with our GOSH dietitian, it seems likely that M actually suffered an oral allergy to sweet potato rather than full-blown anaphylaxis, though it doesn’t quite fit with the known causes and triggers of Oral Allergy Syndrome. If you are interested to learn more about living with OAS, then I highly recommend the blog Feeding my intolerant child, whose description of her son’s oral reaction to a simple fruit ice lolly whilst on holiday is definitely reminiscent of those frightening moments at home a few weeks ago.

Needless to say, sweet potato has been banished from M’s diet for the foreseeable future and we are now seeking a local allergist who can help advise us on dealing with any other more serious allergic reactions that M might experience as we continue along the food reintroduction road. Oh yes, and we’ll also be pleading to get him an epi-pen for our own peace of mind and for the sake of his well-being and I will make sure that we all know how to administer it correctly.

Dinner Plans

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The beauty of staying in the amazing Applause apartments in East Aldgate was the ease with which we could accommodate M’s current dietary requirements at mealtimes. Every morning, he and G enjoyed a bowl of safe cereal and rice milk for breakfast, whilst Mike and I had coffee and brioche before we headed out for the day. Once breakfast was done, the children and I would finish getting ourselves ready and Mike would make and pack lunches for us all. The ability to prepare packed lunches was just what we needed as not only were we able to meet M’s extreme food requirements, but also the dairy- and gluten-free needs of G.

On our first day there, we stumbled across a fantastic shop called “Planet Organic“, where we were able to pick up some previously undiscovered M-friendly bits and pieces, including mini rice-cakes, which are perfect for his lunchbox. Of course, with the packet now nearly empty, the race to find them closer to home is on before he finishes them off. The brown rice noodles have also been a massive hit and make mealtimes just that little bit more interesting than they have been over the last 3 months. Sadly, the one thing we had been hoping to find, rice pasta, was sold out and so my search for that alternative continues.

The more interesting task was that of our evening meal. One of the things we have always loved to do is eat out as a family and it is one of the things that M in particular has found hardest about having his tube. We have had a wealth of experience over the last decade of finding restaurants that will accommodate the ever-changing dietary needs of G, M and even me and we had settled on a few firm favourites that we knew would almost always meet our requirements. Of course, the option to cook dinner where we were staying was great to have, but Mike and I were both looking forward to having a break from the monotony of 3-ingredient dinners and decided to do some focussed research before we even left the comfort of our own home. We spent hours one evening trawling the internet, finding restaurants in the areas of London we were likely to be near at meal-times, looking at their menus and investigating whether they had allergen information readily available to read then and there. To our delight, we found a few where we knew we could cater for G and where it seemed probable we would also be able to order safe food for M, and we couldn’t wait to put our selection to the test.

Our first was Giraffe, which is just round the corner from GOSH and a popular choice for our post-appointment dinners. When we got to the restaurant, I asked the waitress at the door whether they would be able to cook safe food for M before she had time to find us a table and the response was fantastic. She turned out to be the restaurant manager and headed off in the direction of the kitchen to talk to their chef and find out exactly what our options were. The chef assured us he could cook plain, boiled rice and grill a chicken breast for M without using any oil, so, feeling hopeful that this could prove a success, we found a table to enjoy our first family meal out for 5 months. M was delighted with the plate of food that arrived for him and had no allergic reaction to any of it, reassuring us that Giraffe is a safe choice for the future.

As it turns out, Giraffe was the only restaurant we ate at that was able to cook plain rice for M, but we enjoyed 2 other great meals out and both restaurants were more than happy for M to munch away on his own rice-cakes to accompany his chicken and cucumber. The second restaurant was Bella Italia, a popular restaurant chain found across the UK and we had dinner at their St Martins Lane branch. Again, our waiter worked with the chef to ascertain exactly what could be prepared for M and this amazing plate of food arrived – M joked that he thought they had cut him up a whole cucumber to make up for the lack of variety on his plate. We were also impressed with how much their gluten-free offerings had improved since the last time we ate there as G was able to enjoy some GF garlic pizza bread alongside her GF margherita pizza with pancetta and ham with goats cheese.

My final recommendation is Jamie’s Italian and I can’t begin to tell you how impressed we were with the excellent service provided at their Canary Wharf restaurant. From the greeter who listened to our initial needs to the manager who came to answer our questions before we even got to the table, they were keen to reassure us that they could meet all our requirements. As for our amazing waiter, Tom H, he listened carefully and patiently to what we needed, made sensible suggestions based on M’s safe foods, checked with the chef that everything could be prepared safely and treated M just like any other child eating in the restaurant. He was delighted with the plate of food that arrived at the table as it was presented in the exact same way as G’s dinner and his unparalleled attempt to eat almost all of the food served earned him the same prize that G was awarded for eating her salad – an achievement that we rarely manage at home.

All in all, our trip to London proved to be a fantastic and unexpected success when it came to our dinner plans for our stay. We found 3 restaurants who were prepared to go the extra mile, make the effort and help us enjoy some great meals out. Even better, M had the opportunity to feel more “normal” than he has done in a long time, which, for us, was absolutely priceless.

Back to work for a rest

“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

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!“

“I like rice…

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..Rice is great if you’re hungry and want 2000 of something.”

– Mich Ehrenborg

I never realised just how daunting food could be until we embarked on our dietary journeys with our children. It might sound ridiculous, but having achieved such a resounding success from M’s move to the elemental diet, the prospect of food reintroductions caused my heart to beat a little faster, my palms to grow a little sweatier and several middle-of-the-night awakenings to contemplate just how the whole process would work. A big part of the problem was the lack of ~~useful~~ any information from the dietetics team about…well about anything I wanted to know. I like to have a clear plan to follow and needed to understand how we would choose which foods to start with, how each food should be prepared, how much to give and how often. The vagaries of sweeping statements such as serve M “a portion”, with no hard and fast details of the specifics drove me insane, but with lots of discussion, frantic e-mailing and a move back to our old and trusted dietitian rather than the one I’d had run-ins with during M’s admission, we finally got the answers we were after.

Courtesy of alternative-doctor.com

The decision was to begin with rice, commonly considered to be hypoallergenic and therefore a great starting place for M. Whilst many children reintroducing foods following the elemental diet might trial potato first, this was one of the known triggers for M’s allergic reactions and so we needed to find a basic food that was likely to be safe. Despite being told that we could comfortably start with a “portion” of rice, I chose instead to take things slow and M had just 1 tablespoon of plain, boiled rice on that first night. He enjoyed his mouthful and, looking forward to having more the next day, carried on somewhat oblivious to the anxious monitoring I was trying desperately to hide. The evening passed without event and we all went to bed happily – well, the rest of the family went to bed happily, I went battling the usual Mummy-paranoia that accompanies anything and everything that involves my children and their welfare.

Courtesy of smartwebsite.ru

Since that day, around 4 weeks ago now, we have been able to gradually increase the amounts of rice M eats each day and have branched out to include rice milk, rice cakes and gluten-free rice cereal – a veritable feast! This week I even managed a rice batter, using rice flour and sparkling water and made some deep-fried rice balls to tantalise his taste buds. M has shown an occasional atopic reaction to the rice as it triggered a rash across his shoulders and back, although the hives have now calmed down as his body has become accustomed to eating once again. Despite this rash, we have seen no reaction in his bowels and are able to count rice as a “safe” food for him. Even better, we have also been able to add chicken to the mix and this week have been trialling pineapple, though the jury is still out as to whether this may be causing a mild behavioural reaction akin to the one we’ve seen him experience before to soya. Assuming all is well with the pineapple, we have plans to trial pork, cucumber and carrot over the coming weeks and may even have time to squeeze in another carbohydrate before we head back to GOSH in April.

E028 – the success story

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Courtesy of http://www.pmmajik.com

When we started this new chapter in M’s life 10 weeks ago, we approached it with the attitude of “hope for the best, but prepare for the worst”. We hoped that the move to an elemental diet, consisting of 1500mls of E028 each day, would bring some much-needed relief to his bowel and body and that, from that recuperation would come a way forward that would improve M’s quality of life. And whilst we were well prepared that there was a chance it might not work; that it might not bring the recovery M desperately needed and that we might have to look to even more extreme measures to reach our end goal of improved health; that wasn’t a prospect we were prepared to spend too much time on, yet. It was far more important to be positive about the route we had chosen, which wasn’t an easy choice to make and had its challenges from the start: be they passing the NG-tube at GOSH or figuring out our new routine at home.

Courtesy of nameonline.net

Despite the roadblocks thrown in our path, we’ve kept plodding on, negotiating our way skilfully around the inevitable melt-downs, tantrums and even those tempers that lead to a tube being pulled out accidentally. We’ve all learned valuable lessons – don’t storm off in a temper following a sibling argument leaving your pump behind being a key one for M – and we’ve survived as a family and, dare I say it, grown stronger as one too. We have laughed, cried and got angry together. We’ve used that laughter to overcome the depths of despair and we’ve focussed on the important things in life. Mike and I have long been a team, since the disastrous surgery on my left eye for diabetic retinopathy 17 years ago just weeks after Mike had moved to the UK and before we were even married. We may not always see eye to eye, but we have grown together and take turns in being the strong one when the other is feeling weighed down by the world. Now we have 2 children who are learning those same lessons and this experience has shown me just how amazingly strong our children are. They’ve coped with all that life has thrown at them and whilst they may have been knocked down occasionally, they’ve learned to pick themselves up, to brush themselves off and to keep going along their paths. The last 10 weeks have seen them grow in their empathy for others and they too have taken turns in being the strong one when faced with adversity.

Courtesy of artiwards.com

The best news of all is that we now know that every exhausted step has been worth it and I’m thrilled to be able to share that, for M, the E028 has been his success story. Within days of the switch to a food-free diet, the near constant diarrhoea that has been the bane of the last 9 years of our lives stopped. Just like that. No magic potions, no magic wands, no tricks and, so far, no looking back. M has become the fun-loving, caring, well-behaved little boy we all knew was hiding somewhere within himself. His joie de vivre has returned and his humorous outlook on life is much more evident. As each day passes, we are slowly and surely making more and more progress and his confidence has grown as evidenced by his abandonment of his daytime reliance on pull-ups for the first time in a year. It’s not been a perfect cure by any stretch of the imagination and his weight is once again giving us, and the medics, cause for concern, but it’s a massive step, a giant leap in the right direction. We are lucky that this proved to be the way forward for M and we are truly grateful for that as we know so many other families who have not found it to be the answer to their health problems and are still battling on.

Meanwhile, the next step is the big one for us: food reintroduction. We need to work on getting food back into M’s diet without upsetting this balance that he has found right now. There’s a “sort-of” plan from the dietitians about how we go about trialling each food with M, but for the most part it’s going to be driven by us. Having finally got my lad to the point where “I feel better Mummy, my tummy’s less grumbly and I just feel…well…feel so much better in myself“, I refuse to be hurried and I’m going to protect this new sense of well-being with all my strength and determination.

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 day in the life of my tube-fed child

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Ever wondered how having a tube impacts on everyday life? Here’s a little insight into a typical day in the life of my tube-fed child:

6am – 8am – Whilst we try to leave M sleeping as late as possible, our day starts much earlier. Mike’s alarm sounds at 6am and then follows a perfectly honed routine of taking M’s 1000mls feed out of the fridge, warming it in a bowl of boiling water, aspirating his tube (hopefully with as few interventions as possible), fitting the bottle, feeding kit and pump together and then starting the feed itself at as close to 6.30am as can be managed. Allowing M to continue to snooze for another hour or so, with his pump fully supported and protected in his bed and the tube taped securely to his back to avoid accidents, is necessary for all our sanity, not least because he still hasn’t mastered falling asleep much before 11pm each night. Once M’s feed is started, it’s the turn of the rest of us to get up and make sure we’re washed, dressed and eating breakfast before I wake M at 8am.

8am – 8.30am – This 30-minutes window is dedicated to M – getting him up, washed and into his school uniform, whilst negotiating his tube and the pump without too much interruption to the feed going in. M is evidently a natural contortionist and has not only worked out how to thread his pump and tube through the neck of his clothes whilst still attached, but also how to do it the right way round – no mean feat for a child with dyspraxia and a challenge that has been known to flummox this Mummy more than once. However, on school mornings I take the easier option of stopping his pump for 5 minutes and disconnecting his tube to allow him freedom of movement and giving me time to put the pump-stand securely into his back-pack.

8.30am – 9.30am – Pump attached and back-pack secured ready for school, we head out of the door and race off to meet up with the walking bus to get G and M to school on time. Depending on the day, we have to make sure we have the correct selection of bags and other extraneous items with us – school bag, packed lunch for G, water bottles for both, cello or clarinet plus music, PE kits, swimming bag, my packed lunch, my “M” bag (containing spare NG-tube, spare feeding kits, pH strips, 60mls syringe, cooled water for the flush, spare tape and his lunch-time medicine), the 500mls feed for the days when my Mum picks up from school, handbag, office keys, house keys and car keys; oh and mobile phone, mustn’t forget the all important mobile phone! Once at school, G and M go their separate ways with their friends, I pass on any useful information to key members of staff and then head off back to my car for the 5-minute commute to my office.

9.30am – 1.30pm – Fingers crossed this 4-hour slot should be a quiet one. Whilst I’m busy working away in my office and partaking in the occasional cup of tea, M is enjoying a morning at school with his backpack firmly attached to his back at all times. We’ve worked with the school to make some adaptations to allow him to participate fully in all lessons and he’s finally garnered the confidence to run around with his friends at play-time. He will sometimes request a break from the pump if his tummy starts to ache and the school have been trained to know how to switch his feeds and the pump on and off. This 1000mls feed takes nearly 7 hours to give and so I head back up to school for the end of lunchtime play to switch the feed off, disconnect M from the pump and flush his NGT through. The last few weeks I have been working alongside 4 members of staff, who are now fully trained and proficient in M’s needs and they will be taking this role on fully after half-term, meaning less disruption to my working day. Pump and backpack abandoned and medicines administered, M now has the rest of the school-day “pump-free” and I head back to my office.

Courtesy of telegraph.co.uk

3.30pm – End of school and on to the next part of our day. On the days when G and M go back to my Mum’s house after school, she first drops M at my office, where I reconnect him to the pump and the 500mls feed begins before I send them on their way and carry on with my work.

4pm – 5pm – If I’ve been the one to meet them at the school gates, then this signifies the busiest part of my day so far. We start with music practice for both children before they’re allowed to even consider asking for time to play on their tablets or to watch TV. As the gentle strains of music float down the stairs to the kitchen, I’m busy prepping everything for the hour ahead. I take the 500mls bottle out of the fridge and start heating it up, ready for a 4.30pm start time. I boil the kettle to make the feeds for the next day, running between kitchen and dining room to gather up all the necessary sterile medical supplies from the stockpile we have hidden in there.

Courtesy of shutterstock.com

I prepare the 2 mixes of medicine for M to take the following day and store both those and the feeds on the top shelf of the fridge. In between the kettle boiling and the feeds being made, I will hopefully have managed to check M’s NGT placement and will get the feed started on time. Next it’s on to making packed lunches for G and me for the next day, alongside prepping dinner for G and almost inevitably dealing with the requests for a drink, a snack and tablet time from both children. If I’m lucky, I’ll also have managed to wash the syringes and medicine pots, washed the empty feed bottles for the recycling, pulled out G and M’s homework books and might even have had time to take my work shoes off and pull my slipper boots on!

Midnight music practice is the way to go!

5pm – Bedtime! – The rest of the evening is spent convincing M and G to do homework, hearing them read, monitoring their screen time, peace-keeping, deciding on dinner for Mike and me and any one of a million other tasks that parents across the world are having to complete on a school night. Friday nights include a 3-hour stint at Stagecoach for G, M and currently for me too as I need to be on hand to tape down his NGT for dance, attach him to his pump during singing and drama and just generally monitor that nothing goes wrong whilst he’s there. Twice a week that list includes choir rehearsals for me as well as the monthly PTA meetings and the not-so-regular book club meetings I enjoy (assuming I’ve found time to read the book!). We start the bedtime routine at around 7.30pm and insist that lights are out for G by 9pm. M then spends the next few hours until somewhere around 11pm reading books, playing his cello, composing music on his ukulele, playing games and listening to music. He will finally go to sleep once I’m upstairs and going to bed myself and, if Mike is lucky and times it perfectly, by the time he’s put M’s pump on to charge, tidied up the kitchen, put the cats out, set the alarm and come up himself, M will be fast asleep alongside me and it’s a simple case of moving him back to his own bed. On a good night, we might then get 6 hours of uninterrupted sleep until our day starts all over again.

7 years to diagnosis

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