Nets/carcinoid Syndrome · Tube Feeding

Naming – What do you think?

I have had many suggestions for the name of my gastrostomy tube.  I’m so grateful to everyone for all the effort that has been out in.

A fellow blogger, Elaine, has gave me a name that I’m rather struck on.  The name Lavita, which means life.  Rather apt.  For me the tube gives me a better quality of life (when I don’t have sepsis, or any other infection that is).  It provides me with my essential nutrients and vitamins – my daily steak and chips or fresh fruit salad if you get my meaning.  For many people with a tube it is an essential lifeline and the only source of nourishment.

The name I have chosen is Lavita.

 

Lavita meaning life.

Suggestions and comments welcome 💕💕



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Nets/carcinoid Syndrome · Tube Feeding

We have some suggestions

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.

💕💕

Nets/carcinoid Syndrome · Tube Feeding

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

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 😀.

Nets/carcinoid Syndrome · Tube Feeding

Some ward time to make me better

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.