Tag Archives: NG tube feeding

It takes a village

Do you know that quote? There’s a chance you might associate it with American presidential hopeful, Hillary Clinton and her 1996 book of the same title, but in fact it comes from an Igbo and Yoruba (Nigeria) proverb and has a sentiment that is echoed by numerous other African sayings. It recognises the great value of having community involvement in a child’s upbringing, not just for the child and immediate family, but for the extended family and local community too. As I have mentioned so many times before, we are incredibly fortunate to have an amazing community surrounding us, who are unbelievably supportive, and none more so than our fantastic village school.

Since day one, when G first headed in through their gates, we knew that this was a place that would offer our children not just a great education, but also a safe and secure place to grow and develop, all within walking distance of our home. The children have had the opportunity to build strong friendships with others living nearby that will hopefully continue into their teenage years and beyond. In the 2 years that M has been there, we’ve seen time and time again just how invaluable the school community is, not just to M, but to G and to Mike and me too. The impact of M’s ever-changing health has been particularly profound in the last couple of years and there is no doubt in my mind that the unfailing support of their school has been a steadying force for us all.

Without the readiness of the Head and other key members of staff to accommodate M and all his needs, we would have struggled to keep his education a priority this year and I doubt I would have been able to continue working. Their willingness to have M in school as normal and to learn the intricacies of his NG-tube and feeding regime has allowed me to stay in my job, confident in the fact that this is a group of people dedicated to including M in every planned activity and who have taken on that intense in loco parentis responsibility without a second thought. This year in particular has tested their mettle with the demands of not just feeding tubes and complex allergy requirements, but of occupational therapy, dyspraxia and dyslexia added to the mix too. His teacher, Mrs M, has been amazing and she approaches every new challenge with great positivity and an unparalleled sense of humour. Even the minor hiccups encountered along the way – non-stop beeping, blocked tubes, leaking pumps and soaking wet clothes to name but a few – haven’t derailed her and that attitude has helped M cope remarkably well with all the changes this year has thrown at him. I cannot thank her enough for being the rock that M has needed during school hours.

Equally, Miss K, G’s lovely Year 6 teacher has been a real blessing to us as a family and to G in particular. She has encouraged G every step of the way and helped build her confidence throughout the year. M’s hospital stay in December was difficult for G as he and I disappeared off to London for 2 weeks and couldn’t be around to help celebrate her 11th birthday or enjoy the end of term build-up to Christmas. What made a big difference was Miss K, who was fully aware of all that was going on, made herself available to G whenever necessary, understood that emotions were high and made allowances when needed, and stayed in regular e-mail contact with me during our stay and also during the Christmas holidays, so she was as prepared for where things stood with M as the rest of us. She is moving on from the school at the end of this term and I, for one, will miss her, especially as I was hoping she would be M’s teacher for his Year 6 year.

It’s not just the teaching staff who have done their utmost to give us the support we depend on, but the parents and children too and this past week I was left speechless by the thoughtfulness and compassion of M’s class. Following his presentation during EGID awareness week, this group of enthusiastic 9 year-olds discussed different ways they could support him and focused their attention on the fact that he has to wear a backpack all morning, which contains his pump and his “food”. This is what happened next:

“We decided, as a class, that we would all wear a backpack for a morning so that we are able to understand a little of what M has to go through each day. Therefore, on Friday 10th July, it would be great if all of 4M could wear their backpack to school and keep it on for the whole morning! If you can make it weigh about 2 and a half kilograms that will be amazing as that is the weight that M carries around each day.”

On Friday I had the privilege of going into school to see this amazing group plus teacher and teaching assistants with their backpacks on and to express my thanks, not just to the children, but to Mrs M and the school for encouraging and allowing them to show their support in this tangible way. His classmates have adapted well to M’s tube and accept it as an essential part of him. They’ve asked questions and been interested in the whys and wherefores about it and then just forgotten all about it and carried on with day-to-day life, which is exactly what M has needed.

There have also been shows of support from parents, including one from a Mum I’d never met before and doubt I’d recognise again. We were travelling back home late from our last GOSH appointment after a long, hot day in London and arrived back at our local train station. As we reached the stairs of the railway bridge, I became aware of a fellow passenger catching up with us and smiled with her as she chuckled at the inane chatterings of my night-owl. I paused to let her go past, but she slowed her pace to match mine and started an unexpected conversation:

“I just wanted to tell you that my children are at the same school as your son and came home and told us all about his presentation. They both raved about how amazing it was and how much they had learned from watching it and asking him questions. I just wanted to tell you how impressed they both were, especially as they now understand a little more of what he’s having to cope with and we all think he’s incredibly brave.”

The conversation carried on until we reached our cars and said a quiet good-night. This for me is the advantage of having not just a child who stands out from the crowd because of his tube, but also a community who is brave enough to have the confidence to speak out words of encouragement to a near-stranger because of a shared experience and the desire to add their voice to offer support.

From helping take G to school early in the morning to having my tubie home for tea; and from working hard with M to improve his handwriting to encouraging G to reach her potential and aim for the stars, our school, its outstanding teachers and the families who go there have helped us out along the way. This academic year has been a tough one, but we’ve survived all the bumps in the road with the loving support of the truly exceptional community that we live in.

Quick update

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With 2 weeks left to the end of term, there’s so much going on that I’ve barely got time to sit down and commit any useful thoughts to paper, so I’m afraid this post is just going to be a quick update. We’ve just had our first appointment in the new “Complex gastro and nutrition” clinic that our consultant and lovely specialist dietician have started at GOSH. The thinking behind this new clinic is that for children like M, who have a chronic gastro condition such as EGID as well as significant, complex and multiple food allergies, there needs to be regular meetings with both a gastro consultant and a dietician to ensure that everyone is singing from the same song sheet when it comes to treating the health of that child.

Hospital appointments always induce mild nerves in me, but this time round I felt more apprehensive than usual. We are now into month 8 of the NG-tube, when the initial plans were that M would have it for no more than 3 months at most and I was concerned that there might be discussion about removing the tube in the near future. M’s health has been so significantly improved since we went elemental in December that I don’t want to rock the boat any more than is necessary until we have a huge improvement with his diet. With only 4 foods on our “safe” list out of 12 tried so far, it has been a much longer process to reintroduce foods back than any of the medics expected, although, to be honest, Mike and I had always anticipated it taking a full year, if not longer. At the moment, M is coping well with his tube and is keen to keep trying new foods, so there are no concerns that the presence of the tube is having a detrimental effect on him in any way.

So, in a snapshot, the outcome of our appointment was this: that on almost every level, his health is remarkably stable right now and even his hay fever isn’t causing too many issues this year; but the area of most concern continues to be his ever-growing list of multiple food allergies. Our dietician is very worried that M is struggling to tolerate so many foods and now refers to him as one of her “biggest, but loveliest challenges”. The process of reintroduction has been so slow that until we have at least another 2 or 3 back in his diet, we cannot change the amount of E028 he’s having via his tube and so the tube obviously needs to stay in place. We have chosen the next 5 foods to try – white fish, pear, GF oats, venison and coconut – and will also be doing some mini-challenges to see if we can have some more spices and flavourings to add into my recipes. I will continue to remain in regular phone contact with her throughout these trials and we will keep persevering with the food challenges until our next scheduled appointment in around 4 months time.

At the heart of the matter

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Sometimes in life you encounter a small bump in the road that makes things just a little more complicated than you were expecting; that’s something that’s true even for families already dealing with an array of medical issues. Our most recent hurdle was completely unexpected and fortunately had a far better outcome than could have been the case.

We have long been aware that M suffers from a low heart rate and blood pressure, something that has reared its head each time he’s had to have an anaesthetic, whatever the reason. Various medics have commented on it, left him a little longer in recovery and then we’ve just got on with life as we know it, without a second thought. Last December however, things changed and we had to face this issue head-on. During M’s GOSH stay, it quickly became clear that both his heart rate and blood pressure were a little lower than the nurses were happy with and the ward doctors, after much discussion, decided to adjust the parameters as they felt this was perhaps just his normal – I wasn’t so sure. By the time he had started experiencing dizzy spells, had ended up lying in bed with his head lowered and having his blood sugars tested to rule out hypoglycemia as the root cause, I was concerned that it was something more and determined that further investigations were necessary.

Fast forward a few months, M continued to experience dizzy spells, though fortunately he never fainted outright despite a couple of close-calls and we had a referral to a paediatric cardiologist from our GP. M and I headed off bright and early for an 8am appointment and met the charming Dr S, who listened carefully and made copious, comprehensive notes about M’s extensive medical history before starting his examination. He began with an ECG to examine the rhythm and electrical activity of M’s heart and then did an echocardiogram to look at its structure. M was fascinated by the whole procedure and questioned Dr S every step of the way, not least as he was performing the echo. What impressed me most was the calm approach this doctor adopted to my inquisitive boy. He didn’t ignore his questions, nor did he ask him to be quiet, but instead explained each and every thing he was looking at, telling M what he could see, what each part of the heart was supposed to be doing and uttered the words that M has since repeated ad infinitum, that he has a “Waitrose-quality heart”.

However, the ECG did show a problem with the electrical impulses in M’s heart, namely that they do not start in the right place. Dr S reassured me that this was not anything to be overly concerned about as many people live perfectly active and normal lives completely unaware they have this condition, but the complicating factor was that M had been experiencing periods of dizziness, which needed examining further to determine whether any medical intervention was needed at this point. So, we headed into 5 days of testing and poor M had to survive the permanent fixture of a portable ECG monitor for 24-hours a day as well as his feeding tube and pump.

There is no doubt about it, they were a tense 5 days, but M made his way through it with his usual indomitable spirit. He had to push the green button every time he felt dizzy whilst the monitor was attached, so that the cardio team could examine the ECG results to see what was going on with his heart when these episodes happened. He also suffered an allergic reaction to the sensors that were stuck, day and night, to his body, and which left his torso itchy, red and raw for weeks afterward. We experienced more beeping alarms in those 5 days than we had in a long time and I became adept at changing sensors and resetting monitors whenever and wherever necessary. M and I were also able to find some humour in the situation and he agreed to leave further health problems for someone else to experience for the foreseeable future!

Fortunately, we didn’t have to wait too long to review the results with Dr S and the answers were encouraging. M has mild sinus node dysfunction and what is known as a junctional rhythm. At the moment, he is having regular episodes of dizziness due to these problems, but as he has never fainted, they are not considered serious enough to require any treatment. There is a strong likelihood that his NG-tube is a contributing factor to these symptoms as it is known that tubes can trigger a response in the body causing his heart to slow down and so it may well be that when his tube is removed, he will become asymptomatic once again. Dr S will see him in a couple of years to monitor what happens as he heads into puberty as this is considered a key time for potential changes to occur and in the meantime, we will keep a watchful eye to make sure our boy stays as healthy as possible.

Flatbreads and Fajitas

An unexpected day off!

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As a parent of a child with a chronic illness, one of the unexpected challenges you have to cope with is finding people you trust to take on their care, even for a short while. It can be difficult to entrust your child and their needs to anyone other than immediate family and, for Mums in particular I suspect, that may mean you end up doing almost all of their care by yourself. The opportunities to have that much-talked about and desired “me-time” are often few and far between and, to be frank, if you do manage to grab some, it’s usually at the cost of not spending it with your significant other at a point when time together is most needed. In the 6 months since M had his tube, Mike and I have become like those proverbial “ships that pass in the night” as we juggle work commitments, school timetables, extra-curricular activities and those few social events that have helped keep us sane. Any time we have managed to spend together has revolved around appointments or meetings about M and the constraints of school hours.

We are extremely blessed that we do have an amazing support network surrounding us, which pulls together to ensure that we are able to keep going to work and can even occasionally both be out on the same evening, albeit often at separate events. My days are made easier by the fact that M’s school have so willingly shared my burden and responsibility by ensuring there are members of staff who know how to take care of his feeding pump and tube, meaning that I don’t have to be there every minute of every day. Without a doubt, their decision was made easier by the fact that I work less than 5 minutes away and they know they can call whenever they need to, but those phone-calls have been few and far between. My Mum lives close enough that she has been able to continue the routine of picking G and M up from school a couple of times a week, allowing me to work my hours and has been willing to provide some invaluable school holiday care for us too. We even have a babysitter who was willing to learn about the tube and whose GP parents, less than 5 minutes away, were an added bonus for the couple of hours we’ve needed once or twice.

Last week, we had an amazing offer from good friends – in fact, those GP parents I’ve just mentioned – which astounded us and gave us a break from routine that we haven’t enjoyed since last December. It all started at the beginning of half-term, when an unexpected text arrived on my phone as I was in the middle of convincing M to help me clear out and clean the pit he calls his bedroom:

“Hi, we wondered if we could look after the kids for you on Bank Holiday Monday so that you can have a bit of time for yourselves. Let us know what you think. O x”

Then there was a flurry of messages between us as I sat on M’s floor, overwhelmed and close to tears at the kindness of these friends. Not only were they offering to take G and M for a couple of hours, as I originally thought, but in fact wanted to look after them for the whole day and take them to a local wildlife park that I knew my 2 would love. They sorted out food, were not phased by the pump and tube and even claimed to be excited at the prospect of having G and M as their guests for the day. What was even better was that the children were as thrilled as their hosts at having a day out too; and what a day they had! For the rest of the week, it’s been endless tales of marble-run competitions, playing in the hay barn, seeing the animals and the zip-wire in their back garden.

As for Mike and me, well, we had our day together and enjoyed every moment. It may not have been the adrenalin-filled adventure experienced by our children, but we had time to buy some much-needed bits and pieces for the house, enjoy coffee and cake mid-shopping trip and lingered over a late lunch not constrained by complex food allergies and a restaurant of our choice. We didn’t get to the cinema as we had originally hoped we might, but thanks to my Mum, we got our night out at the theatre the following weekend instead – I know, two dates in one week, unheard of! Most importantly, we were able to spend precious time with each other without worrying what G and M were up to and without waiting anxiously for my phone to ring.

NEAW 2015 – The Round-up

NEAW 2015 – The final day

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This has been the hardest day’s blog to write. Inspiration has been lacking and I just couldn’t think of what to write about on the subject of “Engage“. In an attempt to stir my creative juices, I looked again at the many daily updates, photos, videos and statistics I’ve been seeing, reading and “liking” all week, posted by many fellow EGID families on their FB pages, all in an attempt to raise awareness of the illness. It was as I was browsing that I started to notice that many of them began, almost apologetically, with words to the effect that they were sorry to be bombarding their FB friends with these regular informational posts on the subject, but that it would be for this one week only.

That’s when it struck me. This week, 7 days from May 17th to 23rd, I and tens of other EGID families here in the UK and across the world have been fighting hard to raise awareness of this illness that impacts our lives; and we’ve been apologising for it. We’ve been grateful that we have been able to engage with our audience this week and we’ve almost promised to give it a rest until NEAW 2016 rolls around. BUT the reality of EGID for us is that we don’t get that break. We don’t get the chance to focus on it for one week only and then go back to the daily grind of school runs, workloads and running the home. This is it. It’s not even just a year-long commitment, but a life-long one and there’s no escape. I can’t shut down my computer and ignore the posts. I can’t groan inwardly, grit my teeth and ride the week out, thankful that the 24th will soon be here and then breathe a huge sigh of relief that that’s it done for another year. I don’t have that privilege.

The reason the EGID community has been trying so hard to engage with you this week is the people in our lives who struggle with this rare condition on a daily basis: our superheroes. Their strength and courage in facing adversity is awesome and their brave smiles bring inspiration at the most difficult of times.

My reasons for engagement are summed up beautifully here by my 2 amazing children:

and with that, there really is nothing more to say.

Our thanks go to…

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The week is winding down and I am definitely looking forward to the start of half-term and the chance to have a sleep-in over the weekend. One’s thing for certain, being active in raising awareness whilst eating a restricted diet really takes it out of you!

With T for Thanks being our topic for today, what else could I do, but issue a few heart-felt thank-yous to those who’ve made a difference to us in the 12 months since the last NEAW. It’s tricky to know where to start, but, in no particular order, I’d like to thank:

Our families – well it was a given really, wasn’t it? But whichever side of the ocean they may live, our families have been there in whatever way they can and supported us in the tricky decision to move M to a NG-tube and the elemental diet. We don’t know exactly what the next 12 months hold in store for us, but we can be certain that our families will be there every step of the way.

Our friends – another obvious lot, but again we couldn’t have survived the past year without them all. Their help has been invaluable: from text messages to lengthy phone conversations; early morning G-sitting to late night conversations with a cup of tea; and much-needed hugs to unexpected hospital mail, every single gesture has meant more than they can ever imagine and helped keep us strong.

GOSH – our consultant, her great gastro team and, in particular, the fantastic nurses who work with such dedication on Rainforest ward. Their care for M back in December was just amazing and without them looking after us both and giving wise words and training, we’d have struggled even more with the reality of the NG-tube and the feeding pump. We also owe massive thanks to M’s fabulous dietitian, who is always at the end of the phone or the email and has given me lots of helpful recommendations as well as reassuring me that I’m doing things right when it comes to the whole food re-introduction thing.

M’s School – I am very aware of just how lucky we have been with the staff at M and G’s school. They have been so understanding of how life was changing for both children during this school year and have made every effort to look after them and help them feel happy and safe when at school. 5 of the teaching staff bravely took on the role to learn how to manage his feeding pump, which meant that I could return to my job, confident that they were competent in what they needed to do. This week they were also quick to agree to M’s request to share his presentation to the rest of the school and every teacher made time to make sure their class could see it and ask any questions they had. This school has done a wonderful job of nurturing both my children and I will be sad when G moves on to “big school” in September.

G – the best big sister that M could ever have had. She’s loved her little brother through some of his darkest moods and, even if there’s a bit too much squabbling at times for my liking, she’s managed to continue to work on building a strong relationship with him that I hope will only get stronger in time. She’s survived the challenge of SATs, maybe not without the odd tantrum along the way, and continues to strive to do her best at school and at home. And my heart nearly burst with pride the other week when she announced at Stagecoach that M is her hero, because of how bravely he lives and copes with EGID.

Mike – I couldn’t finish without recognising the person who stands alongside me on this, the most challenging of journeys we’ve been on together, and is my strength when I’m feeling weak. We’ve reached a harmony that enables us to take turns in being the strong one during appointments and I can’t think of anyone I’d rather be facing these decisions with. He also understands my need to have some time to escape from the day-to-day grind of EGID and puts up with me disappearing off twice a week to choir rehearsals.

And thanks to all of you, who’ve kept reading my blog, put up with ~~some~~…~~many~~…repeated requests on my part and have done an amazing job at sharing my posts on. Your silent show of support is what helps keep me going, even when times are tough.

Day 5 and finally it’s A for Awareness!

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A for Awareness has meant:

This… and this…

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…lots of this…

and this…

This is the amazing video that M made, with help from his big sister, to share his story about life with EGID. By the time this blog post is published, he will have presented it to every class in his school – that’s 8 classes, approximately 220 children and around 15 members of staff who will now understand his journey a little better.

So come on, you all know the drill by now: share, share and share some more and help us get M’s message out there.

NEAW 2015 – E is for Educate

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It’s difficult to believe that National Eosinophil Awareness Week (NEAW) is once again with us and we have been, believe it or not, even busier this year than last in spreading our message about life with EGID. I’m hoping to again post a blog a day to raise awareness and this year have decided to follow the theme of NEAW, which uses the word E-D-U-C-A-T-E to do it:

Today’s letter is E for Educate.

This year we have been focussing our energies on educating those around us and around M about EGID.

How? Well. in the last week I’ve been interviewed on our local BBC radio station, featured on the front page of our local newspaper and last night we had a display and raffle at a local choral concert. During the week ahead, M will be sharing his story at school via a PowerPoint presentation that he and G worked together to produce and later in the week, I’ll be sharing that video with you all.

Why? Because awareness is key. The more people who know about EGID and trust me, the number of medical professionals who have even a passing knowledge of this chronic illness is staggeringly low, let alone the general public, the greater awareness of it there will be, which in turn means better support for children and adults like M and families like ours. Not only is there little understanding, but there is also an astonishing lack of funding for research into gastrointestinal disorders in the UK. Without medical research, then it is highly unlikely that approaches to treatments will improve and nor, by default, will the quality of life for these individuals.

What can you do? Re-read my explanation of EGID and then spread the word by talking to someone about EGID and explaining what it is. You can share these blog posts this week and ask friends and family to share them on too. Keep an eye on my FB page and Twitter feed to see who else is sharing information for NEAW 2015. Find out more about those charities supporting families living with EGID: FABED in the UK, Apfed in the USA and AusEE in Australia. Change your FB or Twitter profile picture to one of those promoted by FABED or Apfed even for just one day. Be more aware and know that by knowing something about EGID, you are helping support M and others like him.

7 years to diagnosis

Searching for an answer

Tag Archives: NG tube feeding

It takes a village

Quick update

At the heart of the matter

Flatbreads and Fajitas

An unexpected day off!

NEAW 2015 – The Round-up

NEAW 2015 – The final day

Our thanks go to…

Day 5 and finally it’s A for Awareness!

NEAW 2015 – E is for Educate