High dependency, the ward & going home

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.