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

Help! My gastrostomy tube still has no name

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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.

Nets/carcinoid Syndrome

Back home and boy does it feel good

I’ve been out of the hospital for 10 days.  It’s been a mixed bag of a week.  I’m feeling ever so much better – with worse episodes in between, if that makes sense.  The good periods make the unwell, sickly and painful events bearable.  I can go for that.

My amazing district nurses have been coming in and changing my dressing, cleaning and observing the leakage area.  Applying the appropriate creams; hydrocortisone first on the affected areas and then my saviour – the wonderful cavilon.  No matter how busy the nurses are they always make you feel important to them and they make time for a natter.  I have a vision of them chasing their tails by the end of the day.  Especially with gabby folk like me.

Community dietician was in for a visit this week.  With a student in tow.  This time the student was a mature male.  Keen, thoughtful and already has a good bedside manner.   My usual dietician noticed an improvement in my skin, but was concerned that I looked ‘wabbit’ I came back with I think I may have sofa and daytime TV fever.  We agreed perhaps a wee drive in the car and if I felt up to it, a small outing with Steve and the dogs might be just what I need.  Steve wasn’t too keen on me taking on something too ambitious – I agreed. The Labradors excitedly got into the car wagging their tails frantically.  Buddy panting heavily, Bella looked at him as if to say why are you making all that noise – you would think we never went anywhere.  I turned and looked at him and said don’t get too excited Bud – you never know, you could be going to the vet.  Bloody crazy we are; having conversations with dogs.    We stopped near Garvald and let the dogs out for a run.  They loved it.  Muddy puddles especially.   The cool crisp air was wonderful.  Watching the dogs run with endless energy is a beautiful memory.  The short walk for me was a tiring one, every step sapped me of energy.  However the walk did have its benefits.  My brain was re-energised.  The outing filled me with a feeling of warmth and happiness – I was with my hubby of 29 years and my loyal Labradors.

 

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Nets/carcinoid Syndrome

Intravenous Antibiotics is The Way Forward

It’s Saturday afternoon, I’m having some quiet time with my family.  My mobile telephone rings.  I instantly see it’s a call from the Western General Hospital in Edinburgh.  I answer it, it’s the little lovely young GI doctor, Alex, I saw on Thursday.  Your swab results are in.  I hear him say.  The oral antibiotics you are on at present are the most suitable for this infection.  But I think after the length of time you have been taking them we should think about you coming into hospital and going on an intravenous antibiotic. What do you think?  I quickly gather my thoughts, and immediately my mind is racing and I am weighing up in my head hospital versus home.  We chat on the telephone.  And to be honest I am not truthful about how awful I’m feeling, or how much discharge is coming out of the site.  After a discussion , we agree I will stay at home and see my GP on Monday, with a promise if I feel worse before my GP appointment I contact the hospital and go in.

A couple of hours later my professor from Thursday emailed me in response to my husband and sister doing a fundraising run for The Ann Edgar Charity.  I replied saying thanks – at the same time I took the opportunity to let him know the GI doctor had phoned me.  I also told him his I really felt; which was pretty awful.  I was breathless, sore, leaking discharge and had palpatations.  I wanted to curl up on the floor.  Prof sent me an email back and said I should come into hospital.  Steve took me into the hospital.

I arrived at the acute receiving unit.  Waited no time at all.  The nurse came and got me and Steve checked me in with the receptionist.    The nurse told me what would happen.  I would get bloods taken, give a urine sample, get a cannula put in.  And then get transferred to a ward.

I was to get routine blood tests and blood cultures.  Oh boy did they have trouble getting blood out of me.  Every time the nurse had  vein in her clutches it vanished.  It was like they were playing a game of hide and seek.  I’m sure for the medical staff it must be very frustrating.  It wasn’t as if I didn’t have any blood to give them.  On one of the attempts the nurse managed to secure the vein, then the damn thing wriggled away.  As she took out the needle blood ran down my arm soaking the sheet and the hospital gown I was wearing.    Eventually the second nurse managed to get the routine bloods taken.  The cannula proved an impossibility for two nurses, they both gave it three attempts.  They apologised as if it was their fault.  My veins are awful and even the phlebotomist has trouble getting blood from me these days so I pity the nurse that gets assigned to me if they are new to taking blood.  The nurse explained the doctor was on her way to give me a full examination, she will also put the cannula in, as well as take blood cultures.

The lovely looking young lass approaches.  To be honest though on first glimpse she looked fairly stern and unfriendly.  If you were to judge a book by a cover I would have got it wrong.  She was placid, caring and made me feel at ease.  She explained everything in detail she was going to do.  The young doctor did all the necessary, she listened to my chest, took the the time and helped me to sit up from a lying position.  My stomach felt like I had done several hundred sit ups, every move more than ached.  The pain affected my mobility.   She gave me a thorough examination and then scoured my arms for a suitable place to insert the needle.  These blood cultures weren’t going to take themselves.  Her head tilted to one side eyes scanning the surface of my arms.  She gently taps the bone at my wrist.  This will be sore, but it looks like the best place for me to take blood.  She inserts the needle  and slowly the blood comes.  Once the syringe is full, she transfers it into a glass tube and mixes it with a solution before sending it to the lab.  Now for the cannula.  That wasn’t  easy to get in at all.  It hurt, it took a couple of attempts.  I have got to admit I was pleased once it was inserted.   The doctor told me she wanted me to get intravenous antibiotics started and a dextrose drip.  She said I didn’t look well and thought I really needed to get settled for the night.   I was transferred to the ward, for the first night I was in a quiet room all to myself.   What I felt I needed was some feed and plenty of sleep.

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The plan for my hospital admission was to keep me on fluids.  Get the intravenous antibiotics going – give me a full five day intravenous course.  While I’m in monitor my blood sugar levels.  Regularly check my blood pressure, temperature, sats.  My temperature was elevated when I was admitted.  My blood pressure has a tendency to drop like a stone.   The nursing staff were outstanding , nothing was too much trouble. They were always busy and the ward was full however, I was still given the time I needed and never once felt awkward when asking for anything.  The staff all seemed to work together , they looked happy in what they did.  It made the stay much easier.  I got a ct scan whilst I was in hospital.  The radiographers were lovely – I was feeling really rubbish that day.  They pushed the wheelchair close to the bed and elevated it to the most appropriate height.  They took an arm each and helped me onto the scanner.  I shuffled my arse till my head was at the pillow.  The radiographer put a pillow under my knees.  In came the radiologist.  He introduced himself, shook my hand and asked how I was.  He looked at my gastrostomy tube.  We discussed the scan. Many people drink liquid before ct scans – he told me he was going to put liquid through my gastrostomy tube and while the scan was running he would administer contrast through my cannula.  I told him the gastrostomy tube has a catheter tip.  He carefully linked up the syringe to my gastrostomy tube and pushed through the fluid.  The staff were brilliant.    They are put under a lot of pressure in the scanning/X-ray  department. Trying to fit in emergency scans between routine appointments.

My stay in hospital was made much easier by the kindness of staff.  I met some interesting patients whilst I was in.  All made the time go quicker.

I was in hospital for 6 days.  I got my final intravenous antibiotic at 5.40pm.  At 6.30pm I got changed from my pjs into warm clothes.  By 7.00pm I had my discharge letter my medication, was all packed and Steve had arrived to drive me home.   I was so happy to be going home.  I couldn’t wait to get home to our cosy cottage.

 

 

 

 

 

Nets/carcinoid Syndrome

Third Time Lucky?

its been one of those weeks.  Tuesday I was finishing a weeks course of antibiotics for the infection at my peg site.  This was the second week.  After the first week, there didn’t appear to be any difference to the discharge.  Now on day  15 the discharge was more purlent, the quantity increased, the dressings soaked through in a shorter period of time.  My nurse came to the house to administer my lanreotide, as well as change my dressing and clean the peg site.  She asked how I was feeling, I told her truthfully , I felt awful, the pain in my tummy was getting worse.  She commented on my palor.  She took a swab of the site and advised me to get in touch with my GP.

I contacted my GP the next morning by telephone, we chatted, I had an appointment to see my net specialist that afternoon, she said she knew I was feeling really poorly but it was better I went to the hospital to see the prof.  I did.  He was great, as usual.  Listened to what I had to say, asked me and Steve some questions and then decided it would be a good idea if I saw my GI consultant that day.  He made a few phone calls, walked with us and escorted me to a hospital bed.  Within less than ten minutes a GI doctor was at my bedside.  He took a further swab, and gave me the option of taking medication in hospital or at home.  I opted for being at home of course.  So it’s a third week of antibiotics four times per day.  Fingers crossed its third time lucky and they do their job this time.   We are waiting on the swab results, which will most likely be Monday.  My community dietician telephoned me today to see how I am, she will come back to the house in two weeks.

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Sometimes when you feel pained and unwell it doesn’t matter how many folk you have around you, you can still feel alone – particularly at this time it’s good to know folk care.