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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!

The First Hurdle

Our GOSH admission had three key stages, the first of which was to dis-impact M’s bowel and prepare him for a repeat pellet study.  We knew that when the original transit study was done at our local hospital 18 months ago, he was chronically impacted and there was some debate over whether the results, that suggested his transit was relatively normal, were accurate or not. My honest opinion was that he was not struggling with a slow transit colon, but the gastro team at GOSH wanted to be certain and were more than happy to admit him for this test due to the issues we’ve experienced with our unsympathetic local hospital over the last 12 months. My instinct was that nearly 9 years of unrelenting diarrhoea meant that there had to be another root cause for his problems that was still waiting to be discovered and it would just take some persistent looking to find it.

Courtesy of ebsta.com

Courtesy of ebsta.com

Unfortunately, the first hurdle – after the resolution of the whole missing bed saga – proved to be far tougher than any of us had anticipated.  After his amazing courage in facing all the health and medical challenges of the past year, and despite knowing that he needed to have a NG-tube, M showed just how stubborn he can be and steadfastly refused to co-operate with the nurses who were trying to pass the tube.  Wednesday evening saw 5 different nurses, 4 attempts, a flurry of unsuccessful negotiations and 1 small boy, who pulled the last 2 attempts out himself because, according to him, the nurses weren’t listening when he asked them to stop and then told them to go.  Having kept the other occupants of the 4-bed bay awake until past midnight with his cries and screams, we all finally admitted defeat and decided to leave it to the next day’s nursing team to remedy the situation.

Thursday morning arrived far too quickly, with a disturbed night’s sleep for M and an uncomfortable one for me.  We talked about the tube and the need to have it in place as soon as possible so that we could start on the first round of treatment, the dreaded Klean prep – a highly effective laxative that would start the process of clearing his system.  M knew and accepted all the reasons for the tube, but at the heart of the matter was the fact I had a small, scared 8 year old, who had endured a great deal since his scopes last October and was evidently close to saturation point.

Courtesy of The Royal Ballet/ROH Johan Persson

Courtesy of The Royal Ballet/ROH Johan Persson

Even the lure of tickets to go to see “Alice in Wonderland” performed by the Royal Ballet at the Royal Opera House, Covent Garden that very afternoon looked unlikely to be sufficient draw, but my boy’s love for all things theatrical combined with my own enthusiasm for going to see anything at the Royal Opera House eventually overcame his worst fears and won the day.  He agreed to let one of the doctors pass the tube and with 4 of us holding his head, arms and legs, another distracting him whilst it happened and the doctor doing the deed itself, we finally got the tube in place.  With that hurdle tackled, M and I rushed to get ourselves ready and a bag packed for our trip to the theatre.  We went by taxi with another little girl from the ward and a nurse and arrived just in time to take our complimentary seats in a box before the ballet began.  The performance was an amazing visual feast and proved to be a more than adequate distraction from all the tears and trauma of the morning.  M loved the outlandish costumes of the Mad Hatter and we had a lot of fun trying to work out which of Alice’s family and friends were depicted by each of the fantastic characters we met throughout the rest of the ballet.

Courtesy of The Royal Ballet/ROH

Courtesy of The Royal Ballet/ROH

Naturally, as I’ve come to expect when dealing with anything to do with M, nothing was as straight-forward as we might have hoped as we headed into that all important first full day of admission.  The stress of the tube placement led to him being violently sick within 10 minutes and he spent the rest of the day retching and bringing up bile, meaning the Klean prep couldn’t be started until much later in the day.  He reacted to the Duoderm, a dressing usually used to protect the fragile skin of the face by forming a barrier between the cheek and the tube and tape, which meant there was no alternative but to tape the NG-tube directly to his face.  The final straw came in the middle of the night, when after I’d finally got my tired chap to sleep, the quantity of the Klean prep being pumped in at the speed it was upset his system and he woke to be sick for the second time in less than 24 hours.

By the time Friday morning came around, we were both feeling emotionally fragile and physically exhausted and M refused point-blank to move from his bed.  We sat quietly on ward, with M plugged into the television via his headphones and I immersed myself in the escapism of a good book.  It had been a bumpy start, but finally we were on our way.