Tag Archives: dressings

Just one more dress-up challenge!

20150301_144602These past 2 weeks have been filled with one dress-up day after another for our household. Of course, it all started with the Cluedo party we held to celebrate G and M’s birthdays, where we invited guests to come in optional fancy-dress to match their character if they wanted.  The key word was “optional” as I was well aware that not all of M’s friends are as big a fan of fancy-dress as M is, but we were impressed with the range of costumes that arrived on that Sunday afternoon.  We had “Reverend Green” sporting a dog collar and a striking pair of bottle-green jeans; “Earl Grey” in pinstriped waistcoat, bowler hat and monocle and “Admiral Azure” had a home-made pair of epaulettes that would cause envy in the heart of any member of the armed forces.  Not to be outdone by the costumes of the boys, many of G’s friends joined in, wearing dresses to reflect the glamour of “Mrs Peacock”, “Mrs White” and “Lady Lilac”.  Dress-up challenge #1 – done.

20150305_083738Just a few days later came the first of our dress-up days at school, World Book Day.  Refusing to give in to M’s demands for a custom-made costume this year, I instead insisted he wore the army captain’s costume that we had bought for his representation as “Captain Emerald” at their birthday party and suggested he went as “Captain Nicholls” from Warhorse by Michael Morpugo.  We have recently enjoyed the stage production of Warhorse whilst it was on tour around the UK and M had bought himself the book for his admission to GOSH before Christmas, so he leapt at this chance, though in typical M style, he chose to be the lesser-known “Major Stewart” because he “got to ride Topthorn and not Joey, Mummy.”  G also wore a costume she had in her wardrobe and despite dicing with the idea of being “Dorothy” (Wizard of Oz) for the 3rd year in a row, ended up going as the “Princess” from Aladdin, wearing the Disney outfit from our Florida holiday last year.  Dress-up challenge #2 – tick.

20150306_154905The day after World Book Day, M had his Roman “Wow” day at school, requiring, naturally, a Roman costume.  He had originally toyed with the idea of going as a Celtic slave, but when the morning dawned, he had a change of heart and out came my trusty needle and thread, one of Mike’s white t-shirts, G’s plaited belt, M’s old white karate trousers and one of my red pashminas.  Less than 30 minutes later, our very own Roman-esque citizen made his way up to school – not bad for a quick Google search and 15 minutes of hurried sewing!  Dress-up challenge #3 – survived by the skin of our teeth!

 

20150311_210916I had a quick breather over the weekend, which was time enough to celebrate M’s 9th birthday itself and to gather the necessary base materials and trimmings for the next fancy dress requirement – a Greek toga each for the end-of-term Stagecoach performance.  Fortunately we were provided with a set of instructions on how to make a simple toga and G had acted as a model during Stagecoach a couple of weeks ago, so I had already had a sneak preview of how to put the costume together.  The togas themselves were simple enough to make, but then came the lengthy task of adding trim to suit the needs of my demanding duo and the trickier job of making the togas fit.  It might have taken a (very) late night, but the end result was fantastic and I can’t wait to see them perform on stage at the end of March wearing these masterpieces.  Dress-up challenge #4 – future success.

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And so it’s on to just one more dress-up challenge as tomorrow is Comic Relief and the challenge to “Make your face funny for money”.  The costume is the easiest part of the day as they just need to wear their own clothes to school, but the challenge will come early tomorrow morning, when we need to be up at the crack of dawn to give me time to face paint them both.  G wants a tiger and lion on her cheeks, so we’re going to cheat slightly by using M’s tiger feeding friend stickers on one cheek.  I’ve promised her a lion’s face on the other side as long as she’s happy with a cartoon style decoration.  If we have time, I’ll also do her hair in a funky style and, fingers crossed, both will last her throughout the school day and tomorrow evening’s Stagecoach session.

Courtesy of blog.partydelights.co.uk

Courtesy of blog.partydelights.co.uk

M’s face will take a little more work, but I wanted to do something a little different to his tube for the day.  The plan is to cover his tube with both the tegaderm dressing and then a layer of safe micropore before I get to work with the face-paints.  We’ve agreed on a snake design, which will hopefully see me camouflaging his tube as the snake’s tail as it winds around the back of his head, with the snake’s head, complete with sticking-out tongue, appears on the opposite side.  Whether it will work or not, we will just have to wait and see, but I promise a photo if all goes well!  Dress-up challenge #5 – still to be decided.

Managing a NG-tube

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!