Category: Tube Feeding

We have some suggestions

by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

Further to my post yesterday asking for help to name my gastrostomy tube.

I’ve had some suggestions.

Names suggested for my tube so far:

Lucy

Oscar

Mr mouth

Miss persnickety

Sir foible

Madame violet

Lady lightsaber

Little Lizzy

Richard

Percy pipe

Gastro Gordon (after chef Gordon Ramsay)

Garfield

Sybill

Gourmet Gastro

Gastro Gourmet

Cordon Bleu

Gordon Bleu

Hercules

Any further suggestions?  What do you think of the names?  Which one would you choose?  Looking forward to comments, suggestions and shares.  Have a great day guys.

💕💕

Help! My gastrostomy tube still has no name

by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

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With all the hospital admissions since my gastrostomy insertion.  I have neglected to do something rather important.  Name my tube.  This is a task I would normally have done almost immediately after getting in in.

So I’m asking for HELP –  I’m looking for ideas for a name for my gastrostomy tube – you know my feeding tube that goes into my stomach.  All name ideas greatly appreciated.  I will collate the names and then make a decision.

 

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My tube is essential to me.  It’s became part of me now.  And the the routine we go through has became the new normal. For me the tube is so very useful, it feeds me my special formulated feed through the pump 10 hours through the night, for 8 hours of that I’m in my bed, I’m pump fed 3/4 hours in the morning and 3/4 hours in the afternoon.  I also bolus feed through a syringe.    My feed provides me all my essential nutrients and vitamins, as well as calories and energy.  Both pump and bolus feeding help with my malabsorption and gaining weight.  If my gastrostomy tube was a human being on the benefit side it would be a generous provider.

There can be a downside.  It appears to have a mind of its own.  It leaks at time.  I get infections, which at times gave caused me horrific pain, hospitalised me and I’ve needed IV antibiotics.  The tube needs to be kept clean.  Disposable parts need changed.  If it were a human being perhaps I would say it was high maintenance.

Please feel free to comment and suggest a name.  I’m so looking forward to NOT calling it tube.  Can’t wait to read your thoughts.

 A Further Eight Days In Hospital :  December 4th 2015 to December 11th 2015

by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

We arrived at Edinburgh’s Western General hospital. I only sat down in the waiting reception for a couple of minutes and a nurse came with a chariot to take me to a bed and get me clarked in.  One of the consultants gave me a thorough going over.  Well the question is, how long are we keeping you?  She asks.  Steve prompts a reply well anything less that five weeks is a bonus, but it would be a preference to have her home for Christmas to share a Brussel sprout or two 😀 The consultant broke into a smile and said. No promises but be will do our best.  Within an hour and a half I had been booked in,  blood taken , urine sample given, cannula inserted, porter called and I was now getting wheeled along to the ward.

I get into the ward of four, the nurse helps me out of the wheelchair, and assists me into the bed.  She points out where the toilet and shower room is.  After explaining everything to me, she placed the buzzer close to me and said if you need anything press the orange button, and we will come to you.   I thanked her.  Steve put my things in my locker, spoke to the nurses, and then came back to see me, gave me a kiss and hug and headed off home – for Steve it had been a long day.    I looked round the room.  In the bed opposite the lady was sound asleep propped up with several pillows,  the bed next to her, the lady was awake, hello I’m Jess she calls over to me.  The bed next to me has an elderly lady who informs me she is going home in the morning.  She seems so happy about it.   All in all three elderly ladies, a quiet room, an exhausted me, hopefully I will get a sleep.

I did sleep, the staff were brilliant and the room mates friendly.  The lady went home and we got a new patient.  Jess and I talked away like a couple of school kids,  we laughed and joked and had so much in common – I’m 49 and Jess is 87 years of age.  Anne the lady opposite me was very deaf. It made conversation difficult.  My consultant came to see me and it was decided no food was to be taken orally, the only fluid was when I was taking my medication.  And it was to be minimal water when taking meds.    The lack of oral fluid takes a wee bit of getting used to.  Your mouth feels perched.  Your lips press together tight.  The nurses are very kind and supply you with endless nice cubes and foam lollies, you can clean, rub your mouth and or throat.  It really does help.  Mouth wash helps too.  The dietician came too and the plan was to continue feeding through the pej at 100 mls per hour for 20 hours out of every 24 hours.

Consultant visited next day – we chatted.  Talked about how we thought the hole may seal up. I told her about us watching supervet, the honey helping the cat.  My dedicated husband digging out honey out of the cupboard and unfortunately how unlike the cats jaw repaired fairly quickly my tummy was sticky and clothes sticking to me.  She looked at me and said Elizabeth what were you doing with the honey?   I laughed I explained Steve spread it on a half slice of toast and it leaked out as soon as it was in.  Thank goodness for that she said.  I guess she watched supervet.  He actually rubbed the honey on the cats wound.  I think she had visions of us rubbing the honey on my tummy – no such luck – ha ha ❤️

The nurse came to do my flush on my pej.  Oh boy was it difficult to flush.  It actually took 15 minutes to get 50mls of sterile water though the syringe.  The tube is so fine.  Attached to my tummy is my pej and then my feeding pump.  When I get my 4 hours of, this is when I want to shower.  I am still attached to the dextrose drip – for the fear of having a hypo on their watch.  But after being on TPN ive mastered being able to shower with such gadgets.   Once the flush is done. I prepare myself for my expedition.  The walk to the toilet is still a difficult one – I do it in a couple of trips, trot along carrying two towels and using the drip stand as an aid – made the first trip to the shower room.  Now I will head back and get my clean pjs and toilet bag.  As I turn round, the nurse is standing there with my things.  Don’t you try and do all that on your own, we are always here to help , she said.  Got to admit I was so glad she brought them.  Now are you going to be ok?  the nurse asked.  I nodded.  I put down my clean pjs on the chair, and started taking what I needed out of the toilet bag.  I did the needful, managed somehow to get my clean pjs on.  As I was about to put my socks on I could feel the beads of sweat running down my back, I eased myself up from the chair, and decided to walk back to the bed as I was.  I really needed to lie down.  As I was walking over to my bed the nurse came and took my toiletries from me, put them on my locker and then quickly walked back and took my arm,  my you are very flushed she said.  Oh it’s the heat of the shower, I just need to lie down a minute.  I said.  She walked me back to my bed, helped me back into bed.  I was so grateful.  That shower had just sapped me of all the energy I had conserved in my body.   Half an hours rest and then it was time to get my feed back up and running.

A young man walks into our room, now ladies who would like to put a request on the hospital radio tonight.  I’ve been in hospital many many times – in fact I wouldn’t like to think how many hospital admissions I’ve had, and I personally have never listened to hospital radio.  Due to Anne’s deafness she didn’t take part, however the rest of us all requested  something.  His parting words were have a go at our competitions.  Makes the evening fun.

Teatime came – the three ladies had their meal .  I stayed attached to my feed.  My body must be fed – my tummy doesn’t even rumble.  They had fruit crumble for pudding  – one of my favourites.  It must have sent messages to my brain and got my gastric juices working overtime; when it was time fir a dressing change my tummy had been excreting gastric juices that resembled PVA glue – just the kind that it makes up on its own.  My brain must have been saying to the belly ha ha doesn’t this food look good, smell lovely.  That old saying my belly thought my throat had been cut but instead of rumbling grumbling noises I get leaking discharge.  Then visiting – which I always enjoy when my hubby comes in to see me.  I get a chance to see how he is, and catch up with the outside world.  Visiting finished at 8pm.

8pm was the time the radio show started.   The three of us put our headphones on.  The music played, the dj chatted – we bletherered over it.  Competition Time.  It was a mystery voice, we listened, the lady, Avril,  in the next bed said its Chris Evans.  I shouted out the telephone number to her, she dialled it in her phone, hey presto its ringing she says. Oh my goodness I’ve won. She says, i have never  won anything in my life. That boost fair cheered us up.  We listen some more and sing along , the DJ tells us another competition is coming up shortly:  this time sport.   The question is how many people watched the Fifa World Cup world wide in 2006.  There are three options. I’ve heard this question before.  I know I have, the answer 26.29 billion jumped out at me.  I shouted out the answer.  Jess said phone.   I picked up my mobile and dialed the hospital radio number.   Engaged tone.  Try again.  Jess shouts over.  I try –  beep beep:  rather than a melodic ringtone.   The music stops on the radio, that’s it, the dj will announce a winner I’ve resigned myself to defeat.  The dj’s cheery voice makes you smile, he introduces a chap called Gary on the line.  Gary is calling from The Edinburgh Royal Infirmary.  He is asking for a request.  The DJ then mentions the completion.   Oh I’m no good with mystery voices.   He says.  It’s ok Gary, Avril won that competition, we are onto a new one.  He asks the question again.   I’m not sure  says Gary,  but at least I can just guess A, B or C.  At this stage I’ve got steam coming out of my ears.  My competitive streak wanted him to get it wrong so I could phone in.  He answers.  Oh sorry Gary, that’s the wrong answer.    Both ladies and the nurse that was in our room at the time cheer.   I phone again. It’s still engaged, I look up, both ladies in chorus –  keep trying.   So I do.  Finally it’s ringing.   He asks me the question.  And yes I get it right.   Competition winners receive borders biscuits.  My reward was different and I was pleased with what I won.  A mug and a key ring.


All that excitement had tired me out.  It was 10pm.  Time for the late night drug round.  The nurse came round and did all our meds.  The other nurse did our obs and then it was time for my next feed.  The familiar beeping of the pump to let me know the feed was finished and time to change.  The nurse came to detach the finished feed bottle, flush the tube, check the peg site and then restart a new feed for overnight feeding.   The nurse came armed with a syringe, and sterilised water.  She drew up water in the syringe.  Carefully attached it to the appropriate part of the peg and pushed to get water into the tube.  We looked at each other. The syringe was locked tight.  It wasn’t budging a cm.  she tried to push harder.  Nothing.  Her face was rosy pink.  This isn’t budging.  Does it ever get like this.?   She asked me if it often gets like this.  I answered with  its frequently difficult to push but never as hard as this and I’ve never not been able to put water through the tube.   The extension is a very fine tube and much longer than the original gastrostomy.    I think I need some help here.   She said.  We abondoned the feed.  She paged the on call doctor, since it was now 11.50pm.  The duty doctor came.  It wasn’t budging for them either.  A decision was made for the night.  A dextrose drip would go up to maintain my blood sugar levels and a GI consultant would come see me first thing in the morning to do something with the blocked tube.  And overnight the nurse would regularly check my blood sugar levels with the finger pricker to make sure the drip is doing its job.   It did.  

8.30am – the GI consultant was standing at the bottom of my bed.  Well trouble what are we going to do with you now    He said in his thick Irish accent.  I grinned at him and replied unblock this tube if you know what’s good for you!   He drew the curtains round the bed.  Then got the syringe and attached it to the tube.  He wiggled and pumped back and forth.  Nothing.  He detached the syringe.  He then pulled the tube slightly back, I could feel a strange feeling in the pit of my stomach.  Oh that’s a tad sore  I say.  Yes you’ve gone a whiter shade of pale was his reply.  Just bare with me, please,  ive got a plan he continues to say.  So I lie there and wait in hope.   He pours sterile water into a beaker then draws it up in the syringe. He attempts to push some into the tube, it’s still not moving. He uses the push pull method once again and then all of a sudden WHOOSH!!!! Me and my bed are wet. Water and gastric contents on pjs, face, hair, and bed linen.  The doctor tries to apologise.  While laughing I’m thanking him for unblocking the tube.  Im so relieved.  And much more comfortable.   The nurse joins us and starts cleaning me up.  The doctor leaves us and goes attend to something else.  Half an hour later I’m in clean fat face pjs, got the hospital bed propped with pillows my blankets, iPad, writing material.  Looks like I’m all set for lying on a sun lounger by the pool in Ibiza not getting ready to try a feed.  The blue curtain round my bed slowly moves, a voice quietly asks,  is it safe to come in Elizabeth?    It was the doctor who just unblocked my tube.  However, he was more concerned with drenching me and the bed.  I tried to put on a grumpy stern face and say I was annoyed.  I couldn’t.  Soon as I saw him.  We both laughed.   Let’s try the feed then he said.  And so we did.  It worked.  For two days,

For two days all I had was feed via the gastrostomy tube.  The only thing that went down my throat was my medication.  On day three the tube blocked again.  This time there was no flushing it.  I’ve got to admit it was getting scary.  The consultant explained he couldn’t push too hard with the syringe for the fear of the tube explicating.  That statement terrified me.  There is only one thing to do – take the jejunostomy tube out.   Once he had actually said the words – take it OUT.    I wanted it removed NOW.  So I got my way.  It was removed while I was in my hospital bed in the ward.   Got to say it was a strange sensation.  There was a slight tugging feeling.  Then my tummy felt like it had never before:  the doctor carefully pulled the tube at a slow steady pace.  This wasn’t an experience I was comfortable with.  I lay still and thought it best to co-operate in any way I could.  My whirlwind tornado tummy had died down.  As he continued to pull the tube gently, gungie watery gastric juices ran out as the tube was easing out.  Then there was a click.  At last the end of the extension tube.  That was it out.  Thank goodness.  Doctor and patient both relieved.    

Time to Take the big step back to straight forward gastrostomy feeding  (peg) .  Sort the feeding regime with the dietician.  Start of on a very slow rate with my pump.  Just 20mls per hour for 5 hours.  Remember I haven’t been fed direct into my tummy and how much am I going to leak.   Five hours later – dry dressing.  I felt like a toddler that had gone all night without peeing the bed.  The nurse came to flush my tube and check everything is ok before increasing the rate.  And so the rate was increased gradually over the next 24 hours until I reached 80 mls per hour.  At this rate there is a leak when the feed goes in, but only a slight leak.  I asked the consultant when the hole would seal up and I would stop leaking his answer was how long is a piece of string.  I just don’t heal as well as some people.  And take much longer than others.

  • We had a discussion at the hospital and decided I could go home on my feeding regime with
  • The support of my district nurses coming in through the week to do my dressing, check the tube in general, deal with my skin, give me my lanreotide injection,  and any other general medical/physical/emotional support they always do
  • Community dietician coming to the house very regularly to check on feeding regime,  change my prescription if need be. Give instruction on changing connectors for tube. Take my weight.  Give us general support.
  • Regular contact with my GP.
  • Home support from my hubby, and boy do I get this ❤️

Well the staff at the hospital had been tremendous, my room mates were great company for a bunch of sick folk.   I even managed to get some online Christmas shopping done – I bought a couple of bits and bobs or Steve, Tony and Stuart.   But I’ve got to admit I was ecstatic that I was leaving them.  The thought of Our own sofa with my Steve, Buddy and Bella was just what the doctor ordered.   I yearned for my home life back.

The Move to ward 107 – stayed with them till November 25th 2015

by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

So I was on Total Parental Nutrion (TPN).  Nicknamed Dracula food by Steve & me.  We have loved having you the nurse said but your in demand, ward 107 want you.  It’s only across the hall way.  You don’t need to do anything.  We are going to wheel your table, bed with you in it, and all your belongings.    Paula and Esme took charged of my bed and my TPN.  You have to be skill full in maouvering, especially when the there’s a patient like me hooked up to a feed and have a picc line in my arm, they are moving the bed and moving the pump stand .  All went well.  Paula made sure i had ice cold water; which she always did.  Both ladies were very attentive in 106 I would miss the wee snippets of conversations or when you were feeling a bit down or needing something they would notice – I guess there will be staff in 107 that will be the same.  Looking back the nursing in 106 wasn’t just physical support the emotional support was invaluable.  When I had the episode of tissue oedema – Michelle was wonderful and spent time with me.

I’m in my new room of four.  Hopefully I won’t be here too long.     The other three beds had patients in them.  The bed opposite – a lady in her 60’s: Susan,  the bed beside her – a lady in her 50’s and the bed beside me had the curtains drawn with a lot of complaining.

It was the following morning I met my camp mates.  The lady opposite – Susan – we became chums, helped each other, gave a willing ear to one another.  The bed with the lady in her 50’s – we called the bed the lucky bed.  Most people only stopped overnight in that bed.  The bed beside me was quite another story.   I nicknamed the patient “the gringe” – she was  feeling miserable, had been in hospital for over 6 months.  She said it herself in some ways she was desperate to get away from this place and in another way she felt safe and secure.  Rather sad really.

The doctors/consultants/surgeons were the same as previous.  Thank goodness Bev the dietician is still looking after me.  She pops into the ward everyday, between one and three visits a day depending what there is to discuss.    The nurses on the ward are all efficient, many of them are upbeat and help boost moral.

Day 11 of the Total Parental Nutrion (TPN) and I’m still leaking, the pain in my stomach doesn’t want to subside.   The ward round is early this day,  the usual gathering of doctors and surgeons round the bed.  They examine me, listen to how I’ve been, they explain they would have something they would like try.  Since I cannot get fed from the peg at the moment – even at at 10mls per hour it leaks.  New plan put in an extension tube.   The extension is called a jejunostomy feeding tube.  It was to get put in that day in endoscopy.  Cripes no waiting around.

So what’s the jejunostomy feeding tube?  –  The procedure was done down in endoscopy.  Basically I was going to get a 6 foot very fine rubber tube inserted – it would go through my stomach and threaded through my intestines till it reached the jejunum.   It will allow the feed to run through and go into me,  It shouldn’t leak since the feed will be going a lot lower down.

The nurse comes over to me  – “time to get you in  a gown” she says,          ” they will  be taking you down soon”.    She had to help me I’m still attached to the TPN – that’s not allowed to get disconnected, so one arm has the cable running to the Dracula food.  She carefully and skilfully helps me manouevre out of my pjs and into the gown.  At first it was all awkward, wondering which arm goes where, thinking about stuffing cables and large bag of  feed into arm holes of tops, making sure everything is the correct way round and not inside out.  Pjs off – gown on.  All ready.  I will go for a pea.  Now I am ready.

The porter comes for me.  The nurse has to come down with us,  because I have TPN running.  I’ve arrived.  The staff are waiting on me.

I sign the necessary forms, get introduced to the four staff in the room. There are two doctors doing the procedure and two nurses assisting.  First thing get a new cannula in.  As ever it took a few attempts to get the cannula in, thankfully the doctor was a gem, she was gentle.  All set for the sedation so I wouldn’t remember a damn thing 😴.    Next came the delightful mouth spray – tastes of banana – really numbs the mouth and toungue.  Then the nurse gently put on blood pressure cuff, sats monitor and oxygen.  Then my least favourite – the mouth guard.  It was carefully placed in my mouth and strapped.  Then I was turned on my side.  They were Blethering away to me,  and said we are going to put the sedation in now.  That’s the last I remember – thank goodness.  Next thing that’s clear – truthfully is the next day.   I know Steve visited me and my sister visited me – only because they told me.

We got the feed up and running. All attached and running.  Bev recommended running at a low rate to begin with.  So for the first 24 hours the TPN would still run,  I would get goodness from two means,    Once the rate was up and all running ok, I got the TPN down.  The decision was to feed through the extension for 20 hours of 24 – giving me 4 hours of freedom.  Ya beauty.  This was the first time in four weeks I was not linked up to something for 24 hours per day.  A step in the right direction.  Big smiley happy face that day.  

Bev had sorted the dietary requirements so I would be getting plenty of calories:  the downside to this was changing the feed very late at night.  One night.  The nurse was doing my flush and putting up the feed.  We heard a commotion behind the screen.  It was Susan.  She was buzzing to get up to the toilet.  The CSW came to her,   She was short and dumpy, perfect bobbed hair, although she waddled she actually looked like she floated.  She was very cheerful,  when she spoke to you no matter how you felt you couldn’t help but smile.  She had a big heart and a big laugh.  “how can I help sweetheart”? “I need the to go to the toilet and I can move – I’m strapped down to the bed”  the little dark haired lady looked at her slightly puzzled, ” you daft moo your not attached to anything – think you have been dreaming” she said.  She waddled away, chuckling to herself, you  know it’s going to be a break time conversation.     Small incidents like this kept me going.

I was in hospital for five weeks.  Eventually.  We had a feeding regime.  I still had a painful tummy.  And boy was it still leaking gastric contents.  I asked how long would it take for it all to heal up.  No one knew how long it would take.  The time had come to take the big step.  I was getting discharged.  Home to our house.  My own bed.  Snuggle in with Steve – see my buddy & Bella.  Smell the fresh air – oh yes can’t wait.  It was four days later than originally planned, my discharge papers were done, meds done, Steve came to pick  me up for 4pm.  District nurses and GP phoned – organised for next day.  Community dietician & consultant at western general phoned.  All sorted.  So excited 😀.

Some ward time to make me better

by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

The nurse and porter transferred me from the surgical obs unit ward to the surgical ward 106.  I was put in base a in a room of 4 ladies.  The staff were efficient and attentive and catered to every whim.  They made sure I was comfortable and had my buzzer right beside me.    All the strength that I once had seemed to have left my body.  What used to be a simple task – getting out of bed, walking to the toilet, felt like a monumental task.

I needed someone to help me get comfortable, and get in and out of bed.  I have graduated from the catheter to the commode and now walking to the toilet – woo hoo. Now I can walk to the bathroom with a stick in one hand  and holding onto the arm of the nurse with the other.

The next few days consisted of cleaning, dressings, obs, and pain relief.  Most of it, I slept away.  I was given triple intravenous antibiotics.  The nurses on this base have been fabulous. I’ve had a 10% dextrose drip up to maintain my blood glucose levels.  One of the awful symptoms of my carcinoid syndrome is spontaneous hypoglycaemia.  My blood glucose level drops at a moments notice.  The best way to avoid this is to keep something going into my body to elevated my glucose levels.  Since my peg feed is leaking, there is no chance of feeding me through it at the moment – a glucose drip will at least keep my numbers up.

In the other three beds patients came and went and I was still there. I was so tired and sore I didn’t take too much notice of who they were.

With the exception of hubby Steve.  Visiting in the first couple of weeks was kept short.  One of my visitorsin base a was my precious niece Lindsay.  She brought a picture and a story from her gifted daughter Sophie.  Sophie was at church on the Sunday and asked if she could read out her prayer.  She did.  It was for me…..I don’t think there was a dry eye in the church.  Sophie is seven years old.

 

So has came the day I’m moving from base A To base B.  I’m graduating, 😀 now managing to wash myself with a basin – woo hoo.  Actually the physical independence of being able to wash yourself is a fabulous feeling  even if you feel you have just gone 10 rounds in the boxing ring.  It takes five times as long to recover from getting washed as it did to actually get washed.

The room I moved into was friendly enough.  There were two elderly ladies in their 80’s and a lady in her 50’s.  We all got along.  The lady in her 50’s was in the bed that changed people every few day  The three of us were in the same room for two weeks.  The three of us looked out for each other, pressed the buzzer for one another when needed, shared stories and shed tears.  The three of us built up a friendship, that would last for at least the time in the hospital.  We had our own system of communication and helping one another.  When Mrs Mac struggled back from the toilet with her zimmer through the night and couldn’t get her oxygen back on, I would turn the torch on my phone shine it to her and guide her through the process of putting back on the nasal oxygen.  Would then shine down to her slippers and she would use her stick to push them under her bed.  When Rae couldn’t find her glasses we would shout over to her where they were.  When I got up to go to the loo myself – they both would buzz – I would laugh and say do you think I need two nurses to take me 😀 ?

The one time the ladies really did help me was when they heard me swearing.  I woke up my hair wet, the blue vest top clinging to my skin, beads of sweat running down my forehead.  I went to lift my hand to press the buzzer and found I couldn’t lift my arm.  It was a tonne weight. Using my other hand I searched around for my phone to try and shine a light.  OMG all I could see was something that resembled a football shaped fist.  My hand and arm was so swollen.  My instant reaction…. “For fu*****” .  Both ladies were instantly alarmed, put their lights on and called the nurse.  The nurse came.  Turned off the drip.  Took out my cannula and called the doctor.  I had tissue oedema.  It was not pleasant.  I had to get another cannula put in.  The bad news for me is my veins keep collapsing, they look big and juicy and then disappear at a moments notice – naughty little blighters.  After seven attempts the doctor got the cannula in.  All this at 4am.

As all this was going on sometimes I find it hard to smile, the pain in my tummy, the endless leaking, the hypos……….

One evening around 10pm I’m feeling particularly homesick.  My phone vibrates,  I’ve got a video call from my hubby.   It’s so wonderful to see our sitting room and our Labradors.  I call their names, see their ear prop up, oh that’s my mums voice I can see in their face.  I feel tears stream my face.  Warm happy tears.  What I would give to be on that sofa with them now.

We try a feed through my peg feed – just at 10mls per hour – bearing in mind my usual rate is 100mls per hour.  Three hours later we look at the site – it’s wet.  The 30mls have came out.  Abandon feed.  Bev the dietician comes to talk to me.  She is a lovely lady.  She has really kept me going.  I get weighed – I’ve lost 5 kg – Bev says I’ve spoken to Mr Paterson-brown, I think the best thing is to put a picc line in and give you some TPN.  TPN is a 24 hour feed directly into the veins.  Steve and me call TPN Dracula food.  It’s a Friday morning when they requested the picc line so I was told I may have to wait till the Monday.  However, a young man comes to my bed at 12.45 and says hello there I’m here to take you for your picc line.

On the journey down to the cardiovascular lab to get my picc line inserted  we met Mr Paterson-brown, he gently touched my shoulder and said “I’m pleased your getting the line in today Elizabeth, I will be up in the ward to see you in a while”. These good bedside manner from the doctors really help.

Oh wow entering the cardiovascular lab was something else.  The staff were welcoming and chatty.  There was quite a collection.  A nurse, a radiographer, a radiologist and a technician.  They were checking my date of birth and the radiographer said oh you are exactly two months younger than me.  Oh dear, I’ve got the Devils child working on me.  I looked at this beautiful lady, “you are only joking ” I say, she laughs reaches over to me and gently strokes my arm “I was born before the Omen came out” she whispers “I’m a genuine 666”  we laugh together.  One good thing it did do was make me feel relaxed.   The nurse comes in,  “come on you two bletherers lets get Elizabeth all set up”

The room has so many expensive technical machines.  Absolutely fascinating.  I get wheeled over to the bed.  It’s rather high, I need a couple of steps to help me get up onto the bed.  Once I’m on the long skinny bed the nurse straps me on securely.  She puts the blood pressure cuff on my upper left arm and the sats monitor on my middle finger. ” I like to keep an eye on you at all times “she says.   Up on a massive screen comes my name and all my readings.  Yes, I have a pulse 😀.  Thank goodness for that.   Now for my right arm.  It gets held down straight.  The technician has a helmet on that looks like he is going to do some welding.  He covers the majority of my arm with the green sheet, leaving an area of skin exposed.  The radiologist then starts to do his work. After he introduced himself.  His first words were just a scratch – why do they say that ? It’s never a scratch,  he put the local anaesthetic in.  He would use an ultrasound to guide the line up my arm, fiddle around via my armpit and guide it round to my heart.  Fairly complex stuff.  I needed more anaesthetic and it was more fiddly than he would have liked.  But with his expertise he did a grand job and got it in.   The X-ray machine came down approximately three inches above my chest.  I tilted my head to the left, I could see my body on the screen, full chest X-ray with the picc line runnining from my mid left arm up to the arm pit and carrying along till it reaches the heart.  WOW that’s ME.  The nurse came round to my side, put a clear film dressing over the line.  This dressing needs to be changed every week Elizabeth.  She continued to take off the blood pressure cuff and sats monitor.  And finally unstrapped me from the bed. She put the steps back to the bed for me to climb down. “Now take it easy” she gently said.  My head was spinning, I took my time and gathered my thoughts.  Gently does it girl.  Down the steps and then over and onto my bed.  The porter was waiting to take me back to the ward.  When I got back I glanced at the clock, as I often did, it was 3.20pm.  Gosh doesn’t time fly when you are having fun.

My Bear Hans keeping an eye on my picc line.

A few hours after getting my picc line in.  Along came my lifesaving Dracula food.  This is TPN – food fed through your veins 24 hours per day. Very clever really.  The food is light sensitive and needs to be covered by a bag.

Here is Hans looking after my TPN


Once I was started on the TPN feed I had to get transferred to ward 107.  My two ladies said they were going to miss me.  Likewise I would miss them. The care I had in 106 was great – consultants coming round to see me at least twice a day, nurses looking after me very well.

25 October 2015 – Blue light back to the hospital

by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

The paramedics have me safely in the ambulance – we will have you there in no time toots, I hear.  ” just for you, I will out the blue light on, and his nibs, may press the nee naw button on the odd occasion”

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I can hear lots of voices, familiar machine noises.  A kind voice calls my name.  I open my eyes and realise already I’m in the accident and emergency department.  We are going to put some monitors on you to trace your heart, put a cannula in to take blood.  Is this okay?  I nodded.  ECG done, blood tests taken.  They decided to leave the finger sats monitor on.   Everything seems to be getting done very quickly and there are a lot of staff around me.  Subcut morphine getting injected into me for the pain.  “We are just going to wheel you round to another room Elizabeth” as I’m getting wheeled round I see Steve catching up with us – oh boy am I glad to see him.   A feeling of terror fills my body, my heart starts thumping, everything was out of my control.  Steve’s gentle touch gave me the assurance I needed.

Parked in the bay, the nurse lifts my top, takes my obs once more, and gives me yet more morphine.  A doctor comes in, examines me.  Then the nurse starts some of the clean up process on my stomach,  I can only describe it like an overflowing septic tank.  The stench was awful, what was coming out of the infected peg site resembled a newborn baby’s first nappy.  The nurse used swabs and started to soak up the pus that was oozing out.  My stomach was making horrendous rumbling noises.  The pus was flowing and flowing and then erupted it somewhat resembled a geyser in ice. I felt the need to apologise for what was excreting out of my body.   When I did apologise the nurse would return with a comment such as ‘it’s fine Elizabeth,  and we’ve got to get all this out”  not once did she gag, make a face or give any inclination she was dealing with a foul smelling leakage – which helped a lot.

A young man dressed in a familiar uniform asked to wheel me along for a tummy X-ray.  He got me into the room and put the trolley parallel to the X-ray bed, with all the will in the world I could not get from one to the other.  The pain was excruciating.  He assured me he could bring the X-ray above me.  And so he did.

More cleaning, obs, yet more morphine; Steve tells the nurse he gave me morphine just before the ambulance left, and the nurse gave me morphine as soon as I got to hospital and then again when they started cleaning the pus.  The nurse explained to Steve I am in excruciating pain and need this quantity of morphine.  Im ready to get transferred to surgical observation unit.

Twenty minutes in the unit and the surgeon who did my surgery, Mr Paterson-brown was at my bedside.  Boy was I glad to see him.    The unit has a treatment room.  Mr Paterson-brown  acted Immediately.  He explained everything in detail to Steve an me: what he was going to do and how he was going to do it.  He used forceps to cut the flange of my peg to release it, this would let the horrid pus, infection escape out of the wound easily, he redressed it and. Told the nurses how to take care of me.    He arranged for me to get intravenous antibiotics and get transferred to the surgical ward.   The infection had got hold of me – my temp had gone up to 39.4 and I was feeling awful – septicaemia wasn’t a good feeling.   I found the world kept coming and going.  I was there but I wasn’t if you know what I mean.  Looking back it’s like a dream.  I got wheeled back to the ward of the surgical observation unit for the morning.  Then it was decided I needed a stay in hospital to get me better.  This would be a transfer to the surgical ward upstairs.  “Get you up to the ward, put you on some IV antibiotics, see the dietician, get your temp down, dressings done, etc – we will look after you” I hear Mr Simon Paterson-Browon say.  “How long will I be in hospital for?” I ask.  He looks at me and gives me one of his lovely smiles, that I’m sure makes many a nurse swoom, he pats my knee and gently says “we will get you to the ward and take every day as it comes I think, is this ok with you?” I nodded.  If anyone was going to fix this mess I had my money on it being Mr Simon Paterson-Brown.

 

 

High dependency, the ward & going home

by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

Well the peg feed is all in an secure. I’m in high dependency linked up to all wonderful monitors to let the staff know how I am. A warm caring nurse introduces herself and let’s me know she will be looking after me, ” your husband is here” she says buts first we have to get the doctor to check you over, make you comfortable and then he can come through”
The Dr is at the foot of my bed. I tell her I’m very sore, she examines me, she administers sub cut morphine. How much morphine can a wee body take……. All done and dusted with the initial Dr visit. The nurse gets me comfortable. Two nurses together manoeuvre me up the bed – I feel like a helpless pup on its back. They gently place two pillows under my head and back and one pillow between my legs. I have never thought of pillows between my legs – bloody brilliant – releases pressure, helps with the pain. She uses the control to position the bed perfectly. Fix my covers, place my buzzer by my hand. Oh gosh best I’ve felt all day.

Time for me and my hubby. It was so good to see his smiling face. He pulls up a chair and takes my hand. I’ve waited all day for this. The nurse keeps Steve up to speed with everything that has been happening and proposed plans.

My tummy is so swollen, I’m normally like a matchstick, for now I have a football protruding at the front and my back and shoulders feel as though they have gone several rounds in a boxing match.  Knowing the bloated ness is temporary makes the pain psychologically bearable.   Steve leaves for the night.  We get me ready to sit up on a commode to go for a much needed pee.  The nurse gently helps me to a sitting position on the bed.  We sit together for 4 or 5 minutes on the bed.  The next thing I know two nurses are by my side and I am once again lying down in the bed.   My blood pressure had dropped to 70.  It climbed again once I was lying down.  We tried a bed pan, I couldn’t pee – in goes the catheter.   What a relief.   They continued to look after me in high dependency overnight.  In the morning, help with a wash, get me comfortable, the dietician comes to see me and my feed gets started.  All going well.  Only I didn’t really expect it to be this sore.  The pain is excruciating.  I tell the doctors, they say it’s the air and the poking around and it will settle.

I’m in high dependency the Tuesday night, Wednesday night and Thursday till 5pm.

Thursday 5pm I get transferred to the normal ward.  I really don’t feel any better, if anything slightly more pain.  I guess it’s everything returning to normal.  It’s Friday morning and the doctors come round – they ask how I feel – I truthfully tell them – I’m feeding fine, very sore, finding walking anywhere very difficult.  They said the pain was the surgery and would get better.  A physio checked me over on the ward before I left, she gave me a new stick to help me walk and advised me how far to walk, or rather how little and how to take a breather, etc.  she advised Steve bring in the wheel chair to take me home.  Trying to walk from the ward to the car would be far too far.

We got my medicines, letters , discharge papers and thanked the staff for everything they have done for me, Before home we made a stop at my parents house to see my dad.  😀   Both dad and I were really happy to see each other.  Steve had a well needed roll on ham salad and I had a cup of tea.

Then it was the wonderful journey home – yee ha 😀😀😀😀😀😀

I walked in, the house is immaculate – you would never thing think two golden Labradors lived here.    Buddy and Bella were so happy to see me, as I was them.  I was so looking forward to getting some normality.

Normality???   We were in bed all set up with a feed.  Just start to snooze, wham – pain, as bad as ever.  Steve gives me extra morphine.  We doze off.  Couple of hours later and I’m unsettled once again.  This goes on all nigh.

It’s Saturday 10am – There hasn’t been a time since I left the hospital on Friday  that I have felt ok.    Steve does the dutiful, helps me wash, clean pjs, etc.  11am. A familiar face comes through the door.  Brieda – one of my district nurses.  She looks at me – “well I wasn’t expecting this” she says.  You look terrible.  I told her how awful I was feeling.  She checked me over, cleaned my peg site. Changed the dressing, and said she would come back in an hour or two.  To her word she did.  There was no improvement in me, if anything,  I feel much worse.  Brieda looked at Steve “we need to get a doctor”.  Together they worked as a team phoned NHS 24 and arranged for a doctor to come see me.  I got my MST increased and my breakthrough morphine increased.  The pleasant Dutch GP said if it didn’t improve or settle to call back, and regardless to get a house all from my own GP on the Monday.  He started writing out the prescription for the morphine tablets.  Because they are an increase, there was a dosage pill I needed I don’t have at home.  Steve then thought cripes how do I go get the prescription, I don’t want to leave you on your own, I can’t take you, the boys are working till late.  Hazel – my sister, fortunately was off duty from the hospital that day.  Steve phoned her.  I will be there in half an hour she said.  Hazel sat with me, whilst Steve nipped to the chemist and got a wee bit of shopping.  Gosh I have never felt so ill in all my life.  I don’t think I will ever be able to move from this sofa.  I couldn’t get off the sofa.  Tony was working really late, came to the hose about 1.30am Steve is giving me 20mls morphine – “how are you not not your back – out cold” says Tony   “You must be in a lot of pain” – it had just entered Sunday 25th October – Tony’s. Birthday

We slept – or rather didn’t sleep on the sofas in the sitting room.  Together Steve and I saw every hour on the clock   – this was the night you get an extra hour in your bed – the clock went back an hour ar 2am.

It’s Sunday morning – poor Steve looks shattered.  He devotingly deals with me and the labs, gives the house a quick spruce, showers, and finally takes fives minutes to sit down and eat something.    An hour or so later in comes Brieda.  She deals with my peg site, – looking a bit red this morning.  Brieda cleans the site, she noticed there was an ever so slight ooz coming from the peg.  “Need to keep our eyes on this.”

We tell Brieda about sleeping in the sitting room and the huge difficulty in going to the toilet through the night.  The closest bathroom from our bedroom is a fair walk.  When I’m hooked up to the feeding pump.  Attached from my delicate tummy via a long feed tube to the feed on the stand.  Now carrying the stand and maouvering oneself around the house is hard enough – throw in pain, fatigue, nausea, disorientation.  Oh and I have ataxia.  Brieda suggested a commode for through the night – never thought I would be so grateful for a pee and poo aid.    A few hours later Brieda was back with the commode.

We decided we would go to bed early.  Steve had the bedroom looking fab, beautiful flowers on the dresser, low light in, lovely fresh silk bed linen.   Steve put the TV on and I snoozed.  I woke up in agony.  Took more pain relief, take two did it again,

Sunday 2am I woke Steve – I was wrything in agony.  I have never had pain like it.  The world was a rather dark place.  Anytime I have felt ill in the passed, Steve has held me and assured me I will be ok.  This time this wasn’t making me feel safe.  Or believe I would get better.   Steve took one look at me – I need help.  I need to get you to hospital.  Time to call 999 and get and ambulance to take you back to hospital. 

From NG to PEG

by Lizbeth, posted in Tube Feeding

The first health professional to suggest tube feeding for me recommended PEG feeding.  However, when the appointment came round with the specialist he was very doubtful, in fact negative in approach.  He explained how for me it wasn’t the best going in blind into my tummy when we didn’t know exactly where neuroendocrine tumours were situated.  He suggested the NG tube – a much safer alternative in his opinion.

So here we are 12 weeks later.   The NG tube has been a great friend.  It’s kept me fed.  Prevented the dreaded hypos through the night.  I’ve even gained 0.8 of a kilo.  My NG tube has came to its end of it’s  three month life and due for a change.

Whilst I have been at home during the 12 weeks getting good care from my hubby and help from our sons. We have been getting fantastic support from my nurses who come to our home, check my dressings, change them, give me my lanreotide, my flu jab, etc.  the nurse Evelyn, was great, she gave Steve a flu jab at home too.  Dietician has been coming in to talk things through, weigh me.  Prescriptions delivered.  So while I’ve been getting looked after at home I haven’t been forgotten at the hospital.  My consultants have been discussing what’s best for me.

A top surgeon a the royal infirmary in Edinburgh is willing to put a peg feed in surgically.  This means a general anaesthetic.  So here I am the night before my operation in the ward.  Last Tuesday was pre surgery day.  Steve brought me to the hospital to get a check up and go over everything before surgery.  We were met by a lovely nurse from New Zealand.  She listened intently, wrote all the necessary.  Had heart and lung tests, blood tests.  Got weighed.  She took a note of all the medication I am on.  She said if I didn’t have carcinoid syndrome or spontaneous hypoglycaemia I could fast at home and come in the day of the surgery.  However, I’m complicated and an overnight stay before the surgery is needed.

I’m in the ward, Steve and I are chatting away, it’s 6pm.  A lovely lady walks up to my bed, introduces herself and shakes my hand.  She is going to be my anaesthetist during the operation.  The first thing she asks me is if I really want this surgery.  She goes on to tell me she is due to retire in seven months and I am only her second patient with carcinoid syndrome.  She has had many neuroendocrine patients, but they did not have the carcinoid syndrome.  This was only to emphasise how rare the condition is, not to say she was incapable.  Believe me, after talking to her it’s apparent she seems far from incapable, I have complete   faith in her.    The plan is to let me have my overnight feed and have a breakfast, then get put on a glucose infusion.   She wants to have another anaesthetist working with her whilst I’m in theatre.  She told us the normal blood pressure cuff will not be sufficient and I need to have an arterial cannula fitted to monitor my blood pressure.  As well as I will have a glucose infusion running throughout the operation.   She described me like a volcano.  Both my blood pressure and blood sugar levels going up and down at a moments notice.  She explained why after surgery I would go to high dependency.   Steve looked at her, he said “you know how you medics ask patients on a scale of one to ten how do you rate you pain – can I ask you, on a scale of one to ten how worried are you about Elizabeth’s surgery” – her answer was instant – she said “15”. She then smiled and told us she would take very good care of me.  She will send her colleague up in the morning, and would probably come up herself to see me.   After a bit more chit chat she left.  Her mark was left.  I liked  and trusted her.

Half an our or so later a dashing gent with a beautiful voice approached my bed.  He introduced himself – Mr Simon Paterson-Brown,  my surgeon for the procedure.  We chatted about the operation, what he was going to do, the peg.  He explained the dieticians will come see me after the operation and decide when the feed can get started.  Anything from 24 to 48 hours after insertion.    He gave me every opportunity to discuss the operation and ask questions at my own pace.

Later that evening Steve left for home and I got tucked into bed.  Me being me I was allowed to have my overnight  feed – so that went on – via my last NG tube feed and breakfast in the morning.  They weren’t willing to chance any spontaneous hypoglycaemia attacks prior to surgery.

Morning on the day of surgery – October 20th 2015. Steve pops by the hospital to see me before my op.    It’s 2.20 and their coming to take me away Ha Ha.  It’s time.  It thought I would be more nervous.  I was waiting on my knees knocking or my hands shaking – nothing.  A big burly man in blue scrubs came and wheeled me out the room.  The nurse that had been looking after me came along, she chatted away, held my hand,  in general put me at ease.  The handover from ward to theatre was about to take place.  I turned my head to the left and saw a familiar face.  One of the anesthetist nurses was someone I knew, she just had to check I was ok was her dealing with me – I was delighted Gillian was in the room.  I was wheeled into the anaesthetics room.

Wow – prep that needed to be done with the anesthetists.  Yes plural folks.  In this operation I had two – greedy bugger that I am.  The first thing that was said was hello again good to see you how are you.  Pleasantries exchanged.  The NG tube was removed,  then they decided I should get some oxygen an Valium to get an arterial line run in my right wrist to constantly monitor my blood pressure.    This is a tricky job and you need a couple of stitches to hold it in.  I also had 3 cannulas inserted.  I then heard a soothing voice say time to change the mask this is going to put you to sleep.  It must have.  Because the next thing I know I woke up somewhere completely different with a peg feed inserted into my tummy.   I was in the high dependency ward. 

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.