Tag: Tube feeding

Five weeks on and travelling 400 miles again……

by Lizbeth, posted in Nets/carcinoid Syndrome

July was met with a busy time including travelling to Suffolk to celebrate the wedding of steph and Levi.  Five weeks later and we are returning to the same family – Adam (steph’s brother) is getting hitched to Elodie.

As usual it’s like a military operation to get organised to travel anywhere these days.  Outfits chosen, suitable clothing packed in the case.  Check and re check I have all my medication, creams, pump, milks, first aid kit, etc.  And my companion bear – Hans.    Could not possibly travel all that distance without my bear.

The nurse comes into our home on the morning we are heading down south.  This is to check how I am and to do my dressings before heading off.  My skin on my face, particularly where the tube had been resting has become agitated and red – some improvisation is needed: I’ve a cushioned dressing between the tube and my cheek now to prevent further damage.  My nose where the plaster goes is getting red and a tad sore too.  It’s all a little cumbersome but feels much more comfortable.

The day we travelled down was warm.  Sun cream, hats, oakleys and the essential good playlist on the car hifi.  Two hours short of our destination we make an essential toilet and coffee stop.  On walking back to the car Steve gets stung by a wasp.  In the matter of seconds his arm swells like a balloon.  Fortunately we have cream with us to put on his arm.  His singing is less enthusiastic and driving slower – I can tell his arm is very sore and he has been affected by the little blighter.  We arrive at our destination.   Anna has a lovely dinner on.  We all tuck in and have a good natter.  An hour later I’m more than ready for my bed.  Pjs are on, feed pump is set up and all tucked in for the night it’s been a long tiring day.



Friday is the day before the wedding.  Long lie, quiet morning then visit John and Sam in the afternoon.  In the morning Steve rescued a bird,  I was in my element taking photographs.  Visit to John and Sam was lovely – really enjoyed it.  In the evening Adam, the groom, had guests over – some friends, his cousin Megan and her husband Jason from  Canada.  Guitars were played, songs were sung, laughter filled the room.  It was so lovely to see so many smiling faces.  When Steve gets in bed he sees some flashing lights out of one of his eyes- we check the room – I assure him I can’t see any.  Perhaps he is going to get a migraine.


So it’s Saturday and the day of the wedding.  It’s also our 29th wedding anniversary.   I can remember our wedding day so clearly.  We have had our up and downs, but I have to admit I am happy to say that I still love the bones of that cocky young lad I met in high school who became my best friend, my lover, my husband, our two sons father, my rock.  I can hear Steve talking about the day we got married – me on the back of his Honda cb350 the morning we are getting married to get a new pair of shoes.  Four years ago I managed to get the very same bike for his silver wedding present.

This is Steve touching up his precious 25 year old bike.


Ahh such beautiful memories.  Beep beep bong – that’s my 10 hour feed finished.  Time to get up out of the bed.  Disconnect myself from the pump.   Get some boiled water.  Draw it up the syringe.  Flush my tube.  Deteach the tubing and the empty bottle from the pump and stand. Dispose in recycling.  Put pump on charge for later.    Steve comes back into the bedroom armed with a welcomed cup of hot juice for me and to let me know he is heading out with the groom party for the ‘boys breakfast’.  Just take your time he says you have been up several times through the night – last night was one of those nights that the bowels were in overdrive, the feed pump had a mind of its own and went off a couple of times…… I looked at Steve all dressed in his black watch kilt – yes I still love every inch of you.  Probably more so than the day we married.   The good news is Steve didn’t get a migraine, although his eye feels murky.  He wants to eye drops – not like Steve at all.   Fortunately our bedroom has an ensuite so off I toddle to get washed, apply my oilatum, then my diprobase cream over my whole body, then the factor 50 ultra sun sense sun cream.  Phew – lie on the bed and have a wee rest.  That’s one of the things that gets me the most – is the exhaustion.  Words can’t describe the feeling of fatigue.  I don’t like to sound like a moaning Minnie.  It’s amazing how applying some cream to your skin can feel like a work out.  I have taught myself to do things in stages and where possible out of the public eye.  Ten minutes later and I’m ready to put on my Dundee cream (this is special sun reflectant coloured cream prescribed by a hospital in Dundee.  It matches my colour tone, it reflects the sunlight and stops my skin burning.  My skin reacts even in winter sun for as short as time as five minutes and can peel and blister when the light has shone through glass if I am not protected.) – the cream comes in two colours; coral pink and beige, I mix them together and apply it like foundation.  Once it’s applied it looks great.  Gives a healthy glow even on the peakiest days.  Look at the watch – I’ve got a quiet hour before I need to get dressed.  Anna and the girls are away to get their hair done.



Ta da we are all ready for the wedding – and what a lovely day it was too.  I managed to stay till 10pm.  But when Steve caught me sleeping at the table for the third time he insisted it was time for us to retire to our beautiful hotel room.  I didn’t take any persuasion.

The Sunday and Monday were spent fairly leisurely, which was lovely.  Feet up when we wanted, fun conversation, nostalgic conversation &  some TV.   Just what you need in preparation for a 400 mile journey home.   Steve still kept rubbing his eye.    He bought eye drops and put them in.  He assured me he was ok, I wasn’t convinced.    Looking forward to getting home and seeing our lads and our Labradors.  And not to mention getting Steve’s eye checked out.

My New Companion: Hans

by Lizbeth, posted in Tube Feeding

On the day we got trained to use my pump for my tube feeding – Gwen, the lovely nurse who trained us, gave me a card with her contact details and other information.  The card had a website on, it lead me to http://Pinnt.com

PINNT is a UK charity that supports and provides information for patients on intravenous and nasogastric nutrition therapy.

The charity sent me a beautiful bear this morning.  As well as being a soft little bear to tell all your secrets and insecurities to.   He is designed to be a companion to take on journeys.  Also a fantastic way of promoting awareness.    I’ve called my bear Hans.    I’ve called him Hans after a doctor.  The doctor was the chap that gave my Mum her first diagnosis of lung cancer.  He was kind and gentle.  I was with my mum and my sisters when he told her.  Mum and I hugged so tight when we left the consultation room.

Hans will feature in a few of my blog posts.   Already I have confided in Hans.  Fingers crossed he is loyal and doesn’t blab to others – ha ha .

This is lovable beautiful Hans.

Hans                       image

Overcoming fears of tube feeding

by Lizbeth, posted in Tube Feeding

It’s been three weeks since I left the hospital with my nasogastric tube.  If I’m honest on the way home I felt apprehensive, my nose was throbbing, and I wasn’t quite sure how confident I was about how well I would manage this new regime.  The big benefit I had was the support of my hubby.  With him by my side I believe I can cope with anything.

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Suddenly there is a whole new way of living.  Not to mention the new vocabulary that comes with it.  When starting off in this whole new world of tube feeding there seems so much to take in.  The physical aspect:  How to set up the pump, cleaning of syringes, using appropriate tubes, changing dressings on my face, taking the ph from my stomach contents.

Some of the new words become part and parcel –

  • flush (not what you do to a toilet):  using the syringe to put water through the tube to prevent it from clogging
  • continuous feed:  the feed drip feeding through the pump for several hours
  • nasogastric (ng):  tube goes into the nose, down the esoohagus and into the stomach
  • enternal feeding:  delivery liquid feed through the tube direct into stomach
  • obtaining aspirated:  using syringe to pull up contents from stomach
  • peptamin:  the type of feed I have

The first few days were slightly strange, I always referred to the guidelines, was a tad scared I was doing something wrong.  The district nurses came in and assured me I was coping very well with it all. I’m fortunate to have good nursescome in at least twice a week to see me.

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Once the first few days passed the whole procedure was very automatic and everything was getting done without a thought.

three weeks in and it all feels so natural and fairly easy to do.   It’s so good to wake up in the morning and know I haven’t had a hypo through the night.  The biggest advantage of the feed is I don’t have to get up during the night and make myself something to eat. I can wake up with a ‘normal’ blood glucose measurement.

The whole process is fairly time consuming and our recycle bin is now full a lot quicker than before.  However the advantages to the feed outweigh any problems, disadvantages.

At the the discussion with the consultant and team we were asked about the physical  appearance of the ng tube.  We answered Steve and I are comfortable with it.  During the first few days it took a wee bit of getting used to,  I was conscious I could see the loop that is attached to my face.  The first day I walked with my head at an angle the tube felt slightly stiff.  And truthfully I was worried the tube would come out.    Now I’ve got used to it.  My home visit nurse said to me a couple of days ago, when she comes in she doesn’t see the tube – she sees me.  That made me feel good and I believed her.  I’ve been out and about but last night was my first big outing.  Out for dinner and then to see a sell out show at the Edinburgh festival.  The assembly rooms were packed, we got a drink at the bar them queued for our seats.  Steve gently held my hand.  We were a normal couple out for the evening.  This is the first time I forgot I had s tube in.  The audience were there to see Elaine C Smith, not stare at me.  I can honestly say I didn’t feel looked at in any way – oh well with the exception of my hubby.  It’s always lovely to catch your other half looking at you.  Gives you that warm feeling of being loved.

The long and the short of it.  Prior to getting my ng tube fitted I was scared of the unknown.  Now I have it in I realise there was no need.

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Introduction to nasogastric tube feeding at home

by Lizbeth, posted in Tube Feeding

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.