Tag Archives: elemental feed

NEAW 2015 – The final day

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letter_eThis 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.

superheroThat’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:

myfeelins familyfeelings

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

United we stand

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Yes, you guessed it, today is:

U for Unite-page0001

and signifies perhaps the hardest challenge we’ve taken on for EGID awareness week, ever. This week Mike and I are standing in solidarity with M and with all those other brave souls out there who have to battle with EGID every day and have no chance to opt out when things get tough. For the past 2 years, I’ve documented how we’ve followed M’s diet for the week, restricting our diets as he has to restrict his and even drinking the occasional glass of Neocate Active to get a glimpse into that aspect of his life.

IMG_0940When we first started planning our activities for this year’s awareness week, I briefly considered eating like M again, but dismissed it, thinking that the limitations of 3 ingredients and a litre of E028 on a daily basis might just prove to be too much for both Mike and me.  However, fast forward a few weeks to my preparations for my newspaper interview and I revisited the idea of “eating like M” and wondered if actually this might be something we could achieve.  I chatted it over with Mike, debated whether we could do it and, both being keen to give it a go, decided this would be our diet for the week.  Each day will be filled with 3 meals of rice, chicken and cucumber prepared in a variety of ways and Mike will even be drinking the litre of E028.  I have undertaken this with careful consideration of my own T1D and will be keeping an even tighter eye on my blood sugar management to make sure that I stay fit and healthy during the week.  I have also opted out of the E028, but will be partaking in a pint of Neocate Active everyday to show willing.

We’re not on our own either as there are other parents, family members and friends who will be spending some or all of this week eating like their loved ones. Trust me, it’s not an easy decision to make, but is a great way to raise awareness and get conversations started, which is reason enough to stick to it for a week. I am filled with admiration for just how well M has coped with such a bland diet for so long and have been struck with the harsh reality of how much pain he must have been in for years to be able to cope with these limitations just because it’s helping him feel better. Three_Musketeers_SwordsSo tomorrow when you’re tucking into your bowl of honey nut corn flakes or a bacon roll for breakfast, or sitting with your feet up dunking a chocolate biscuit into your cup of tea, or perhaps even enjoying a plate of fish and chips for tea, spare a thought for M and the others like him who are eating a restricted diet right now or may not be able to eat anything at all.  This week it really is a case of “All for one and one for all“.

“Elementa(l)ry, my dear Watson”

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(with profuse apologies to all Holmes fans out there, but I just couldn’t resist!)

As we head into our 5th month of E028, the positive impact of the elemental diet on M is plain to see.  Family, friends and even casual acquaintances have commented on his improved health, behaviour, appearance and overall much happier demeanour.  We have seen glimpses of the happy-go-lucky, confident and outgoing child he can be when constant pain is not plaguing him and we have celebrated that success with him.  We’ve even embraced the somewhat daunting prospect of food trials despite the lack of useful advice we were originally given and have ploughed on regardless, surviving the highs and lows of this latest rollercoaster ride. Believe me, there have been plenty of both.

The highs have been encouraging; 

highsWe have successfully reintroduced rice, chicken and cucumber to his diet and he’s loving being able to eat something solid once again.  I’ve adapted, tweaked and sometimes created from scratch recipes to give him a range of meals that make meal-times more exciting than just plain boiled rice, grilled chicken and a few slices of cucumber 3 times a day.  We’ve even found a new favourite in rice noodles, something he would never eat when he was small and, thanks to the advice of 1 kind reader, I have even managed to lay my hands on a bag of the elusive rice pasta and he’s enjoying the variety to his diet.  The bonus of finding some amazing allergy-friendly restaurants earlier this month was a real boost and will make a big difference to us all.

M has stayed positive and has very much been involved in making the decisions about what foods he trials next.  We are working closely with our GOSH dietitian to choose our hit-list of foods in a balanced manner and I speak to her every 2 or 3 weeks to provide an update on our progress.  Even better, she is constantly contactable via e-mail, which has given me huge peace of mind as I know I can ask her any questions I might have and she will always come back to me by either phone or email, even if it’s just to say she’s looking into it and will let me know.  We’re once more on a small break, but are looking forward to attempting carrot, corn and apple over the coming few weeks.

And the lows have been exhausting.

exhaustionmanageI never realised just how exhausting the process of food challenges would be and that’s on all levels: physical, mental and emotional.  Each new food starts with the excitement and hope that it will be a safe food for M and managing expectations has become key.  It feels easy at the moment to be downhearted as we have had 4 fails – pineapple, pork, sweet potato and banana – and a question-mark over the 5th – salmon; but it’s critical we stay positive as there are an awful lot more foods for M to try, and every success brings with it many more options for meals.  Unfortunately, every fail leads to disappointment and discouragement and we have to pick ourselves up, brush ourselves off and look forward to the next one as best we can.

The need to be constantly alert to the risks of cross-contamination during food prep, as well as ever-vigilant about rogue additions to lists of ingredients and being constantly alert to any signs of a reaction in M, requires a stamina I didn’t know I had.  That is something I’m sometimes finding it hard to hang on to.  Whilst we are almost desperate to successfully introduce another ingredient to our meagre list, it’s become clear that we have to do it at a pace that suits M’s pernickety digestive system, and that seems to be a very slow rate indeed.

SHERLOCK_HOLMES_-_01-743978However, despite the exhaustion and the blood, sweat and tears shed in the name of finding another safe food, the future is looking bright and M’s better health gives us all a reason to keep going, even when it seems tough.  To have him in the best health we’ve known for 9 years means that our decision to go elemental really was…well…”elementary, my dear Watson.”

Home or away?

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IMG_0746With a trip to London for M’s GOSH appointment an unavoidable part of the Easter holidays, we decided to make the best of it and spend a few days there on our very own mini city-break.  In preparation we spent one Sunday afternoon leafing through the pages of Mike’s “501 Days Out” book, looking for inspiration for what we could do during our stay and  G and M quickly filled a sheet of A4 with their suggestions.  It was left to Mike and me to make the final cut and hone our plans and, despite desperate requests for Legoland Windsor and Chessington World of Adventures, we decided to stick to those attractions within a reasonable distance of where we’d be staying and drew up a list that felt exhausting just looking at it.

where_to_stayThis epic event was our first overnight stay away from home since M had his tube back in December and I drew up thousands…hundreds…well one very long list of everything I needed to do in preparation.  My first job, once our trains were booked, was to find somewhere to stay that would meet all of our requirements.  Usually we choose to stay in one of the Premier Inn hotels on the south-side of the Thames, be it near the London Eye or closer to Southwark Cathedral and find them a great base for walking, or using the underground, to almost anywhere we’re intending to visit.  Unfortunately, leaving the actual booking to a little late in the day meant that none of our usual suspects of hotels was available for the 3 nights we were planning to stay and instead I had to search for a suitable alternative.  Whilst browsing frantically looking for a room at the….an….any inn, I came across the option of a serviced apartment and things suddenly started to fall into place.

We chose a one-bed apartment in East Aldgate, not too far from the Tower of London and easy walking distance from the nearest tube station.  The benefits seemed huge:

  • with a separate bedroom and pull-out bed in the living area, G would be able to go to sleep at a reasonable time, whilst M played his usual night-owl games
  • there would be plenty of space to store all of M’s medical gear as well as the supply of safe foods for both him and G that we would take with us
  • having a kitchen meant we could easily prepare M’s feeds, make packed lunches and even cook dinner, thereby covering every possible meal-time option we might face
  • it also meant we would have a fridge to keep cooked meats, cheese for G and M’s feeds in overnight without the need to request one beforehand and then keeping our fingers crossed it would be available when we checked in
  • finally, we would have a quiet place to retreat to when things got too much or the children needed some down time in the middle of the day

So it was an easy decision to get that apartment booked.  The days flew past until finally I had no choice but to tackle the task of packing for our trip.  By the time I had everything I needed for M in the case, plus our supply of safe foods for both G and M, I was beginning to wonder whether I’d have room for any of the clothes the 4 of us would need for 4 days in London.  With some canny packing and careful choices about exactly what was necessary, I just about squeezed everything in and we were ready for our next big adventure.

“Muuummm, what’s for tea tonight?”

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1186944_650637321674312_1447413190_n

Oh how this resonates..

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

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

Rice-flour sugar cookies

Rice-flour sugar cookies

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

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

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

20140818_143459Our experience last summer in Disney proved that this type of requirement does not need to be restrictive as excellent allergen information was readily available and nearly everywhere we ate produced meals for G and M that rivalled those being served to any other customer there with a “normal” diet. The chefs were knowledgable, came to our table to discuss their allergy needs and made the effort to find out what my challenging duo would like to eat – excellent service all done with a smile.

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

“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

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

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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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

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

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.

 

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.

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.

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:

  1. Give your child a glass of water to drink, wait around 15-20 minutes and then try again
  2. 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
  3. 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

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

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

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.

20150203_082342Following 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.

20150203_160111Feed 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.

Christmas without food

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

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

Courtesy of abcnews.go.com

Courtesy of abcnews.go.com

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

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

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