Introduction to nasogastric tube feeding at home

Into our sitting room walks the friendliest chatty lady.  Armed with a Hessian Tesco shopping bag, not filled with shopping, not bearing gifts of food parcels,   And no lovely sweets to munch.  Instead there were items that were unfamiliar to Steve and me.

Steve and I sat together on the sofa like a couple of school kids niavely watching in anticipation.  Gwen, the nurse specialist methodically explained the whole process.  She was very thorough and hands on.  Carefully telling us how to set up the pump, what tube to use, checking the ph level, flushing the feed tube.   After an hour or so of first time training Gwen left.  She gave us an abundance of literature to read through.  We both felt fairly confident in using the pump and setting up the feed.

Thursday morning came.  Steve and I arrived at the hospital early.  Time for a hot chocolate and malt loaf at the hospital cafe.  We toddled up to the ward.  Lovely nurse Stacey was waiting for us.  She took us to a designated room.  She came in with a loaded trolley. Amongst other things on it was the tube  and a cup of water with a straw.    I asked how I should sit on the large comfortable chair.  The nurse was very reassuring and said I was to sit in whatever way I wanted and she would work round me.  I got comfortable the nurse measured the length of the tube against me and then was instructed to rest my chin on my chest.

The procedure was just about to begin.  She lubricated the tube and then inserted it into my right nostril.  I’m not going to lie, I felt nervous.  As the tube was pushed in I felt this pain up my nose.  It was as if a bee had stung me.  I remember saying oh that feels awful, rather sore up my nose.  Simultaneously the nurse said we are in the back of your throat and ready for you to take a sip of water.  As I drank from the straw the tube was fed down.  I knew co-operating would make swallowing the tube much less painful and it would all get done a lot quicker.   Voila – it had now entered my stomach.  Carefully the nurse secured the tube to my face.  A large plaster covering 90% of my nose and a transparent dressing on my right cheek. Now to check the placement – the nurse put the syringe on the end of the tube and started to draw some contents from my tummy.  Nothing.  Oh !  Of we went to X-ray to check where the tube had gone.  Had to make sure it had gone into my stomach and not entered a lung.   The guide wire had to be left in.  This would give an accurate image on the X-ray.  The great thing with modern technology is by the time we were back at the ward the doctor had seen the X-ray on the computer in the ward.  Great news it was in the right place.  Steve got me some orange juice, I drank it.  Fingers crossed we would get some contents now to check the ph level.  As the nurse drew up the syringe some of the orange juice I had just drank was now in it.  Carefully she squirted some fluid onto one of the strips.  Waited for it to change colour then compared it to the chart.  Ph level 4.  Perfect.

My dietician came to the ward to see us.  We had a frank discussion.  She explained all about building up my tube feed.  Gave us lots of good literature, together with do’s and don’t’s.  Also very useful telephone numbers just in case I need help.

I had a constant pressure in the back of my throat and my nose was really hurting by this time.  I was reassured this was all normal and would ease.  We left the hospital and headed home.

The next morning the district nurse arrived, basically to check in on me and give me support, change face dressing.  The plaster on my nose was stuck firmly.  With a bit of gentle tugging and pulling she got the plaster of and checked the measurement.  Good news the tube has not moved.

For the first few days I have to feed through the tube for 10 hours during the day.  Gradually building up the speed of the pump, allowing me to get more feed each time.  The feed is peptamen.  It’s partly digested and appears to be the best formula for my tummy.

Four days later and all is going better than I hoped.  My body is tolerating the formula.  I can confidently set up and use the pump, draw fluid from my tummy and check ph level, and can flush my tube.

My nose is still uncomfortable and my throat is now much less sore than it was even yesterday.   It wasn’t the easiest procedure I’ve had.   However a combination of keeping calm, a good clinician and having my hubby was my biggest asset.

Discussion on tube feeding

Over the last year I have struggled maintaining my weight and keeping up my blood sugar levels.  Despite waking up from sleep throughout the night to eat as well as eating as much as possible throughout the day on top of taking extra supplements in the form of the delightful fortisip and ensure drinks.  Getting as many as 7 down my neck a day.   My hubby tells friends I’ve got every woman’s dream – I can eat what I want and never put on a pound or an inch on my waist line.  The truth is he knows how much I struggle and the difficulty I face everyday.  The old saying what goes in has to come out; in my body it’s accelerated.  The food is no sooner in and either up it comes or within hours my bowels are moving.  The loose movements leave me exhausted and drained.  Hubby, Steve, said the other day ‘all your energy leaves you from your backside’ – this summary is spot on.  

Steve comes with me to my consultations.  We all agree- how things are going can’t go in like this…… I’m exhausted; especially with waking up through the night. But if I don’t eat through the night I will have a hypo.    Mealtimes are a chore.   Fitting a tube feed and giving me some food when I’m sleeping looks like the best solution.  Initially it’s discussed that I get a peg feed fitted.  The tube feed will be in my tummy and unless I told anyone or had no clothes on, no one would no I had it fitted.  I could hook up through the night, get valued nutrients and get some sleep.   We get an appointment to see the nutrician specialist consultant.  In Steve and I go, to be greeted by a team of four.  They were very informative.  The consultant starts by explaining about the peg.  Then he tells us why it’s not such a good idea to go ahead immediately.  He explains, inserting the tube into my tummy could hit a tumour and make things worse.  And even if he get the device fitted without colliding with any tumour, the foreign objects in my body could cause problems, it could accelerate growth or encourage new growth on or near the tube.  Steve stopped him and said that’s lots of negatives…… 

The team do think I need to give tube feeding a try to see if I have any improvement in quality of life.  So we are going to try a ng tube for a month.  One of the team will come to our home and train us on how to use the pump, all about the tubes, feeds, etc.  then in the next couple of weeks I will go to the ward and get a tube fitted.  This means I will have a tube up my nose – the thing I’m not looking forward to is getting the tube fed up my nose and it going down the back of my throat.  Hopefully once it’s up and running I will have a bit more control over my blood sugar levels and I will get a more peaceful sleep.  It’s worth a try.