Tag Archives: Great Ormond Street Hospital

E028 – the success story

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.

Managing a NG-tube

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Formula made, it’s time to move on to what was, to me, the most daunting part of our NG-tube (NGT) journey and the bit that scares other people the most – the NGT itself. Whilst it now feels like second nature, this was the biggest hurdle I had to overcome in my quest to become confident in managing M’s enteral feeding at home. Let’s start with the very basics of what a NGT is and the job that it does.

Courtesy of http://www.rch.org.au

The tube is a length of flexible material, which is inserted through the nose and travels down the oesophagus into the stomach with the purpose of allowing food and medicine to be placed directly there. There are a myriad of medical reasons for a NGT to be passed and in M’s case, it was because he wasn’t able to drink the quantity of E028 needed each day due to being a reluctant drinker and the very unpalatable taste of the feed. The NGT is measured against the child’s body before it’s inserted to make sure enough length is passed for its tip to sit comfortably within the stomach. There are varying types and sizes of tube that can be used to allow for the age and size of the child, differing situations and the various medical needs. M has a long-use “10 silk”, which he found to be the most comfortable to have in and can be left in place for up to 8 weeks before it needs to be changed. Other tubes are more rigid and require changing on a weekly basis, something that just wouldn’t be practical given his current anxiety about having the tube passed and his allergic reactions to anaesthetic.

Once the tube has been passed and is in place, it is secured to the cheek using dressings and tape. There are a number of these available and it really is a case of trying them out to see which works best for your child. We quickly discovered that M has an allergic reaction to Duoderm and Micropore, two of the most commonly used dressings and so we’ve had to work out a method of fixing the tube to his cheek that won’t cause his face to become red and inflamed. For us that proved to be a small strip of Tegaderm, which I then decorate using an amazing product I found on an US website called Feeding Friends. These stickers are printed on medical tape and add some fun to the prospect of having a NGT on permanent show. By sticking one over the top of the Tegaderm strip, M’s skin doesn’t react and he loves nothing more than choosing which friend will grace his cheek each time. I change his tape approximately every 3 days, though we find that if it gets too wet in the bath or shower, then we need to replace it more often.

So far, so good and nothing too scary you may think, but now comes the most difficult bit, making sure that the NGT is still in the right place before starting a feed. This is known as “aspirating” the tube and requires you to draw an amount of liquid up the tube to check that its tip is still sitting in the stomach and hasn’t become dislodged or moved during the time off the pump. We were told to use nothing smaller than a 20mls syringe to aspirate the tube and are provided with 60mls syringes by our home delivery team. Remembering to “kink”, or create a block in, the NGT before you start – this ensures that no air can go down the tube whilst you fiddle around with it – carefully attach the syringe to the end of the NGT and pull back on the plunger with – in my experience – your fingers tightly crossed that you can draw some of the liquid out from the stomach. Depending on the time of day and what your child has been up to beforehand or even what, if anything, they’ve had to drink, this can prove to be something of a challenge. It is possible for the tip to become stuck to the stomach wall, which creates a vacuum when you try to pull upon the syringe. I’ve found that sometimes it will “pop” free and a sudden flood of liquid will rush into the syringe and at other times, your gentle tugging will be met with nothing but stubborn resistance and a failure to draw even a millilitre out from the stomach.

Courtesy of http://www.8ball.co.uk

The key thing to remember at this point is NOT TO PANIC. The first time it happened, I desperately scrabbled around in the depths of my memory to recall what advice the GOSH nurses had given, all the time attempting to resemble an oasis of calm and to impart none of my increasing anxiety to an unaware M. There are 3 easy ways to try to resolve the problem:

Give your child a glass of water to drink, wait around 15-20 minutes and then try again
If the drink hasn’t helped, take a deep breath, lean your child at an angle of approximately 45° for 20 minutes before your next attempt
If you still can’t aspirate the tube, get your child to lie on their left-hand side as this is where the stomach is positioned and may encourage that stubborn NGT to finally drift away from the stomach wall and allow you to test exactly where it is

If none of these has worked, or if your attempts to aspirate are causing your child discomfort, then you need to get the tube medically checked. In our case, this meant a trip into our local A&E department, but could simply mean a phone-call to your local community nursing team or feeding team, who will be best placed to advise you on where to go and what to do next.

Courtesy of jamali4u.net

However, assuming you are able to aspirate the NGT with relative ease, you now need to check the pH of the liquid you’ve drawn from the tube to make sure that all is where it needs to be. You will have been provided with pH strips as part of your enteral feeding “kit” and testing couldn’t be easier. Simply drop some of the stomach juices on to the pads at the end of the strip and watch them change colour. Memories of secondary school chemistry lessons come flooding back at this point and testing substances to see whether they were alkaline or acidic. In M’s case, we are looking for a pH of 5.5 or less, indicating that the liquid drawn is acidic and therefore likely to have come from his stomach. Always check with your nursing team what pH level is safe for your child as certain medicines are known to affect the results and an adjustment to the recommended results may be made.

Although aspirating the tube is a scary prospect, the risks associated with a misplaced tube are great. I was lucky to be trained on all aspects of M’s NGT whilst we were in GOSH, but even then found the first few attempts a frightening prospect. The most important lesson I learned was to “kink” his tube every time I did anything with it and now I don’t even think twice about doing it – it’s just another step in the process of starting his pump feeds. Once it’s confirmed that the NGT is correctly positioned, tube feeding can now begin, but that, I fear, is a lesson for another day!

Our first lesson in Elemental feeding

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Courtesy of shutterstock.com

The last 11 years have been filled with one parenthood-survival lesson after another and it has to be said that the majority of those can be attributed to M. I’ve now honed my parenting techniques to become, not just referee, cheer-leader, taxi-driver and chief bottle-washer, but also self-made expert in rare gastro conditions, skilled negotiator with both small children and medical professionals alike and ardent advocate for (my) children’s rights. Our latest, and steepest, learning curve carries an uncanny echo of the challenges my own parents had to conquer nearly 30 years ago when faced with the diagnosis of my Type 1 Diabetes (T1D). They had to learn fast all about blood sugar monitoring, counting carbohydrates and, perhaps most daunting of all, how to give insulin injections. There could be no question of whether they felt comfortable in doing these things because they knew that their new role in my life was not just as parents, but as the front-line defenders of my everyday health. I have hazy memories of learning to inject on an orange and know that those oranges were subject to the first faltering attempts of my whole family.

Courtesy of soteriapublishinghouse.com

We’ve had to learn how to feed our child via NG-tube, a process known as enteral feeding and similarly there’s be no time to stop and question whether we were ready, willing and able to do this because M’s health demanded it of us. Each step is not particularly complicated in itself, but the anxiety of remembering what we had to do and when was overwhelming in the first couple of weeks and I was scared of getting it wrong. Due to a desperate need for M’s bed in the long-term gastro ward at GOSH, I had no choice but to learn as much as I could as fast as I could, so as not to be left struggling once we were back in our own home. We have the support of an excellent nursing team from Nutricia, the company who provide M’s pump, feed and medical supplies, but that’s it. Mike and I have quickly had to become experts in this new part of M’s journey and the extraordinary has now morphed into the routine.

For those of you who have never had to do enteral feeding, or who are learning about it for the very first time, my next couple of blog posts will cover the process in a “step-by-step” approach, which will hopefully give some useful tips on managing tube feeding. I would also highly recommend reading this blog post by fellow blogger, MumAnnie123 – it was my “go-to” article when we were incarcerated at GOSH and gave me lots of tips and advice about maintaining my sanity as we ride the NG-tube feeding roller-coaster. The one thing I’ve quickly learned is that everyone will have a slightly different approach, be they parents or medical staff, so make sure you follow the basic rules, adopt recommendations that meet your family’s needs and adapt to a routine that suits you and your child the best. At the end of the day, you are the people living with the elemental feeding and need to have a system that works for you – alter the feeding routine to work with and around your life at home.

Following a timetable that is hugely reminiscent of our days with a baby, each day actually begins the night before, when I have to make up the bottles of M’s feed alongside the preparation of G’s packed lunch for the next day. Each evening as I boil the kettle, I gather everything needed to make his feed – packets of the Elemental E028 powder, scoops (1 blue, 1 yellow), a 1 litre plastic measuring jug, hand whisk and 2 sterile packs containing the 500mls and 1000mls plastic feeding containers, also more glamorously named “reservoirs”.

We have a detailed “recipe” for M’s E028 feeds, which was calculated by the GOSH dietetics team to provide the calories and nutrients he requires daily based on his age, height and weight and I carefully measure the required scoops of the formula into the measuring jug. Next comes adding the boiled water, which was surprisingly trickier than it sounds as Mike and I both made mistakes on our first weekend at home. What hadn’t been made clear to us in the hospital was that the water added is enough to make the required amount , in M’s case 550mls, and NOT, as we both first read it, add 550mls of water to the mix. Whilst this sounds a fairly inconsequential error, the nuance was important and the outcome was that we ended up with a lot more formula that M could drink and at a lower concentrate that he needs to remain healthy. I add the boiled water whilst it’s still warm as I’ve found this dissolves the powder more thoroughly and a good whisk ensures that there are no lumps poured into the feed bottles. This is important as those miniscule lumps can be enough to block the tube and cause the pump to alarm.

Feed mixed and bottles filled, we then store them in the fridge for up to 24 hours, following the advice of both our dietitian and the community nurse, who reassured us that this was safe to do and is a shortcut that makes my life a whole lot easier. M hates having his E028 cold, so I make sure that the bottle is taken out of the fridge at least 30 minutes before his feed is due to start and warm it in a bowl of hot water – a great tip shared by the nurses at GOSH. The first few days felt chaotic as I rushed around making up feed, storing bottles and trying to make sure that we were doing everything we were supposed to do. Now I’ve found we’ve fallen into a steady rhythm as I’ve found my feet in making this process work for me and that was the key to our success.

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!)

Kracklecorn? What’s Kracklecorn?

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Courtesy of gruffalo.com

Kracklecorn! Why, didn’t you know?

(with apologies to Julia Donaldson and the Gruffalo)

No? Well neither did I until we travelled to London for M’s September GOSH appointment. I had left Mike to keep an eye on the children whilst I fought my way to the train’s buffet car for a much-needed injection of caffeine. As I waited for my latte to be made, I spotted an attractive looking blue and white striped bag hidden amongst the more familiar packs of crisps and bars of chocolate and, intrigued as to what it was, I asked if I could look at the packet and ran my experienced eye over the extremely short list of ingredients. I was thrilled to discover that the four ingredients (maize corn, rapeseed oil, cane sugar and sea salt) were all 100% safe for both G and M and naturally snapped up a bag of Kracklecorn for them to taste, with fingers tightly crossed that I might just have found another M-friendly snack for them to enjoy.

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

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

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

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

a Rafflecopter giveaway

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

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

The 3rd and final step

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M and his tube at GOSH

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

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

M’s rather snazzy new pump

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

M and his tube at home

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

Courtesy of http://www.kksblog.com

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

School – the hospital way

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

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

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

M’s amazing chocolate Christmas creation

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

Round Two: the Pellet study and other adventures

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Courtesy of 123opendata.com

Once the NG-tube was finally in place, M and I then had 5 long days to survive the copious amounts of Klean-prep, senna and picolax that were pumped into his system to clear his troublesome bowel. Although we appeared to be off to a slow start, these powerful laxatives finally did their job and by late Monday afternoon, the gastro registrar was confident that we were ready to start the pellet study and a x-ray confirmed his opinion. I had already met with one of the gastro investigation nurses, so knew that the 3 pellets, containing different shaped plastic markers, were ready and waiting on the ward for M and all we needed to work out was how best to get him to swallow them.

Over the last year, we have made huge strides in getting M to swallow tablets whole and no longer need a spoonful of Grandma’s jam to help the medicine go down as he has conquered his struggles and now merrily swallows them with just a mouthful of water to help. However, there were 2 problems we now had to overcome: M’s new-found fear of swallowing capsules with the NG-tube in place and the fact that these pellets are of a size that even I would struggle to take easily, let alone a small child. The nurse suggested we resorted to mixing the markers into a couple of spoonfuls of jam and that was our first attempt. For reasons that will remain forever unclear, M found even this method difficult to manage and instead resorted to swallowing the pellets one tiny marker at a time. It may have taken considerably longer than anyone expected, but the pellets were taken and so round 2 of our admission was well underway.

The week should have been an easy one, as it was supposed to require nothing more of us than completing the pellet study, but unfortunately it was at this point that I had to brace myself and find the strength to weather an unexpected and turbulent storm. Despite both Mike and I having repeatedly made clear that we have almost no support from our local hospital and their paediatric gastro team, this information appeared to have got lost along the way and I found myself embroiled in a battle to keep M in hospital once the pellet study had started. GOSH felt sure that we would receive all the care and advice we would need from our local and nothing I said would convince them otherwise. I spent more hours than I care to remember fighting M’s corner and insisting that the consultants didn’t discharge him before the study was complete and the NG feeding started. The pressure was huge, both on me – as I talked, discussed and cried my way through numerous meetings with nurses, doctors, dietitians, psychologists, PALs workers and indeed anyone else who would listen – and on Mike – as he sought to juggle the challenges of working, looking after G at home and supporting M and me whilst we were several hours away and only contactable by phone.

It quickly became evident that GOSH simply could not conceive that we could be as lacking local support as I was asserting we were and I have no doubt that they were beginning to view me as something of an overwrought, overtired, over-emotional and somewhat neurotic mother, who was unbelievably arguing to keep her child in hospital, when most other parents were trying desperately to get their children discharged before Christmas. By the end of the week, it had all come to a head and I was at my wits’ end, but was finally vindicated late Friday afternoon, when our local dietetics team refused in no uncertain terms to take on M on a shared care basis with the GOSH dietitians – an entirely new experience for GOSH, though sadly an all too familiar one for us.

Despite all the heartache and distress this unnecessary battling caused, there was some really positive light at the end of the transit study tunnel. The final x-ray on Friday indicated that M’s bowel is working more or less as it should. It may be a little slower than ideal, but the markers had moved through M’s system and the consultant was delighted with this result, which means that the bowel is currently doing its job. We really couldn’t ask for anything more. So, the conclusion drawn is that it is the complex and multiple food allergies that have been causing M’s diarrhoea and other symptoms because of his underlying condition, EGID and the final step is to identify these as accurately as possible.

7 years to diagnosis

Searching for an answer

Tag Archives: Great Ormond Street Hospital

E028 – the success story

Pump action

Managing a NG-tube

Our first lesson in Elemental feeding

How to survive a hospital stay – the Parents Edition

Kracklecorn? What’s Kracklecorn?

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

The 3rd and final step

School – the hospital way

Round Two: the Pellet study and other adventures