Tag Archives: Nasogastric intubation

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!

Advertisements

Round Two: the Pellet study and other adventures

Courtesy of 123opendata.com

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. battle 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.

lighttunnelDespite 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.

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.

 

Playing the waiting game

I have tried to write this post over and over again tonight and, having reached draft number 4, I’m still not 100% happy with it.  I’ve really struggled with how to put this past week into words without sounding long-winded or overly-dramatic or twee.  It was a tough week for us all and I’m not sure that there are really words that can encapsulate our emotions and reactions.  All I can try to do is to share our experiences and give you a sense of where we are now that we’ve reached the end of it all.  I’ve decided to split the week into more than one blog-post as there is just too much to share in one simple offering.

Courtesy of bbc.co.uk

Courtesy of bbc.co.uk

The first day was filled with long waits and I wish that this had been something I’d been prepared for, but my survival guide gurus hadn’t pointed this out as a possibility.  I was naïve in believing that the process of getting M booked in and admitted onto the ward would be a straightforward one, especially given the chaos of sorting the appointment out, but I had successfully talked myself out of my anxieties and lulled myself into a false sense of security.

Despite my last phone conversation with S confirming that I needed to have M at GOSH for 10am on Monday morning, the information hadn’t fully trickled through their systems and we started the day with a 20-minute wait to even get into the waiting area for the ward.  Having found M’s notes and confirmed that we were indeed due there at that time – no, it wasn’t a figment of my imagination –  we were then subject to a further 1 hour and 20 minutes waiting before M was seen by a nurse.

Fortunately for me, M discovered a sympathetic father in the waiting room, who was able to help him get the x-box working and gave him tips on how to play Lego Indiana Jones on it.  M and another boy tackled the game together whilst I took a seat nearby, where I was able to keep an eye on M as well as listen out for his name to be called.

Indiana Jones - a great distraction for a long wait

Indiana Jones – a great distraction for a long wait

Eventually I heard M’s name and the process of getting him booked in began.  His measurements was taken, discussions were had about when and how to tackle the various medical procedures that were needed over the next few days and finally we were shown to his bed.  It was at this point that the nurse apologised for the delay, “But we hadn’t been expecting M until 4pm” she said, I shrugged my shoulders and inwardly sighed.  We had a bed, the nurses were going to get the NG-tube fitted later to start him on the Klean-prep (a strong laxative) and all we needed for the time-being was some lunch.

Unfortunately, we had waited so long to be admitted that it was now too late to arrange a special diet meal for M and instead he and I wrapped up against the rain and headed out to a nearby supermarket to buy some M-friendly foods to satiate his appetite.  We filled the afternoon with activities and TV as well as participating in a brand new research study that M had been invited to join at the end of the week before.

The George Cross awarded for "acts of the greatest heroism or of the most conspicuous courage "

The George Cross awarded for “acts of the greatest heroism or of the most conspicuous courage “

It wasn’t until around 4.30pm that we finally tackled the matter of the NG-tube.  To say that I was, and still am, incredibly proud of my brave little boy is a gross understatement.  This was a new procedure for him and he sat without making a noise as they passed the tube through his nose and down into his tummy.  His distress at the pain was obvious as I watched a single, solitary tear roll down his cheek.  The only sound was uttered once it was in place, “Cuddle Mummy“.  That nearly broke my heart, to hear my usually lively, garrulous and loud lad reduced to a single heartfelt request.

They started him on the first 4 litres of the Klean-prep and so our wait began.  We had no idea whether M was still constipated or not after the summer, so the proposed plan of attack was 3 days on the Klean-prep at a rate of 4 litres a day, adding the standard pre-procedure laxatives of senna and picolax on day 3 and then, if there was any doubt whether his bowels were clear, an enema was booked for Thursday morning before the scopes happened.  By Wednesday, it was looking possible that the enema might be needed, but we finally had the necessary break-through on Wednesday evening and that little joy was avoided.

At this stage, M and I had been more or less confined to the hospital buildings since around 2pm on Monday.  I had been able to pop out to grab meals, but poor M hadn’t been able to leave at all.  We had taken advantage of 2 occasions of being disconnected from his drip and stretched his legs beyond the space of Kingfisher ward.   It had been an interminable 3 days and in very many ways, we still had a lot of waiting to do.