Thursday, 19 August 2010

Crisis Meeting

Finally after a waiting a month for various medical people to come back off holiday we managed to have the crisis meeting we'd all been waiting for.

The aim was to make plans for my future discharge - my dad wanted me 'HBC' - Home By Christmas.
My surgeon said he did not feel I was fit for discharge and therefore wasn't ready for rehab, although plans could be made now for when I was ready.

But when would I be ready, I'm never kept updated about my condition, I don't know if my drains are working, not convinced the meds are working. I haven't eaten a full proper meal in weeks because if I do eat then I either vomit it back up or have urgent full evacuation diarrhoea. I've tried the high protein shakes which have only made things worse. Thankfully this bought me a little more time to not have a nasal-gastric tube reinserted. If I couldn't tolerate the shakes then I couldn't tolerate the feed!

Aside from the side-effects of eating, I'm struggling with meal times, my usual times at home would be breakfast about 10 am, dinner about 2 pm and tea about 6.30 pm but in here, breakfast is at 7.30 am, dinner at 12.30 pm and tea at 4.45pm or 5 pm. Now trying to eat at such an early time is beyond me, but when that breakfast consists of about 30 tablets on top of a single Weetabix, at 7.30 am, I think you'd understand my reluctance to eat at that time. As for a warm cooked meal at tea time, it was agreed that my husband and mum should bring something in a flask for me.

It was also decided that I should have a commode at the side of the bed to encourage me to get out and about! - I sat there thinking 'yeah right' they an't get to me quick enough with a bedpan never mind trying to find a commode, and they certainly wouldn't leave one at the side of my bed all day and night..... we shall just have to see how that 'pans' out!!

Finally, the doctors wanted me moved out of my side room and integrated back into society, so I was to give up my single room with lake view and be moved into a communal room with view of a brick wall!

So let's see how we get on with this then!

Tuesday, 10 August 2010

Help Me!

Had an enjoyable day today....not. My mum and dad came to visit me and whilst there I started to feel uncomfortable and my mum noticed a smell, well, upon inspection it was me or rather the collection bag on my back, it had leaked all over me and so I was covered in putrid smelling pus! Cue the buzzer for some nursing assistance .

Oh yeah, sorry why was I ringing the buzzer, it's been that long I've forgotten ... oh yes, I remember!

This is what I've had to put up with, ringing for assistance but never getting it at the time I need it, it always comes too late, so I'm the one who's to blame for wetting and soiling the bed, I'm the one who has to lie there in my own pee and poo, but I'm also the one who's been listening to the bell buzzing with no help forthcoming.

Anyway, the nurse did come and with help from my mum got me into the shower.  She then left my mum to shower me whilst my dad waited outside. It was only when we came to dry me that we realised she had gone and left us with no towels or bed robes to get changed into. My dad was sent to find someone whilst I sat and shivered in the bathroom. Dad came back with the ward sister a.k.a The Wicked Witch, she wasn't happy about having to come to me with towels and gowns and made it quite clear that she wasn't happy about it, implying it was my fault!

I need HELP to get ME out of here soon!

Thursday, 5 August 2010

Summertime Blues

So Thursday 22nd July 2010 and a daily action plan had been drawn up to get me mobilised, but to be honest it wasn't worth the paper it was written on, also it only covered Monday to Friday - no plan for it to be continued or adjusted over the weekend and so by Sunday it had been abolished!

A week later and I was back off for another scan and still feeling poorly, by now I had stopped eating. Well there's only so many times you can eat the same thing on the same day week in and week out. Sunday is a dodgy roast dinner with something that resembles tinned beef in gravy, Monday is some fish pie that must just be mashed boiled in a fish stock because I have yet to see a fish, Tuesday is sandwich day, tuna for dinner and ham for tea, Wednesday is the day I look forward to - chips and beans days ( cheese pie optional! ) Thursday, Friday and Saturday are also sandwich days. I once tried a curry but that was an horrendous experience!

3rd August and I received a visit from a lead matron, my mum and dad had put a complaint in about how I was or wasn't being looked after. She was very shocked when she walked in to see a frail young body lying in a bed. It was about this time I finally broke down. After being told day in and out by the nurses that I should be depressed with all the things that had been going on I think my mind started listening to them and decided that yes I should be depressed, I don't know what really happened in my head but I did just wake up one morning and feel down in the dumps.  So following my conversation with the lead matron she wanted me to see a member of the mental health team and talk to someone unconnected to my ordeal.

Friday, 16 July 2010

Sick & tired of being sick & tired

I finally got a bed on a regular ward and was transferred late at night, I was welcomed by the most lovely nurse who gave me a great big hug and sat with me as I cried my heart out, that night it finally hit me what had happened. I didn't have a long stay in my new room, it was small and had no view out of the window so a day later I was moved to a slightly larger one with a view over the boating lake.

My pancreatitis reared its ugly head again and I was sent for a CT scan which now showed 3 areas of fluid collection in my abdomen so I then had to have 3 drains inserted to drain the pungent pus out of my body, painful - ha, I have yet to find a word in the dictionary to describe the pain of having a drain put in your body. It's done under local not general anesthetic and although there is a slight numbness I could still feel everything, cue people sitting outside the X-ray department looking slightly worried when I was wheeled out after screaming the place down!

So with my 3 drains and catheter in place, I was referred to a tissue viability - wound management nurse who decided the best course of action to get me healed up quickly was to put a VAC on my C-section ( this is now 8 weeks after my c-section and I'm still not healed up ) also time to get the physiotherapists involved and get me up and about. I haven't stood up in 8 weeks so of course my legs are very unsteady, coupled with having to carry a catheter bag, 3 drains and the Vac pac, I managed about 5 steps before needing to get back into bed.

Spring turned into Summer and I was still in hospital, still taking only a few steps when I could get up, I was also starting to waste away. The menu was on a fortnightly rota and I was getting sick eating the same old crap week in, week out. Turns out it wasn't quite the food making me ill but yet another infection, cue blood transfusions and stool samples. I now had pancreatic insufficiency so was put on digestive enzymes whenever I ate anything. I wouldn't have minded but they were the size of horse tranquilisers and very hard to swallow, so yet again something else to cause me to throw up.
Still wasting away in bed, my mum & dad and husband, now had to take it upon themselves to bring me food when they came to visit, but at least now I was well enough to have my son as a visitor, unfortunately for me he had been growing as I had been shrinking, so I found it quite hard to cradle him and feed him - especially as I still had my gaping hole in my stomach!
Hours turned into days and drains came and went - I lost track of how many I had in and out of me - it felt like a new one every week, certain family members declined to visit anymore away because they couldn't bear to see me looking ill, so I started to slump into mild depression. I refused to get out of bed anymore because I wasn't getting anywhere, I started to have panic attacks when the nurses put me into the chair for mealtimes and changing the beds. After an accident in the shower when a nurse dropped me on the floor I refused to get up for a week, because I was so scared. I had no energy in me and my legs could no longer support my skeleton like body. I was now sick and tired of being sick and tired.

A crisis meeting was arranged, and everybody was summoned!

Saturday, 8 May 2010

The next 5 weeks

OK so I know its taking a while to get up to date, I'm only now putting the pieces together.

So the day is now 20th April 2010, imagine my horror as I woke up after my mind tripping out to find I couldn't speak or move. I found myself with a gaping hole in my abdomen the size of a dinner plate, a feeding tube up my nose and a tracheostomy in my throat. OK I should have been thankful that I was alive, but to be trapped in your body not able to move or speak, especially when you're still suffering with diarrhea, I started to think maybe it would have been better if I wasn't.

The next paragraph is an extract I found on another blog - Melodies pancreatic tale which just about sums it up.
"Lying there in my sterile hospital bed, complete with wheels on the bottom and with metal bars on the sides, I could no longer disregard the pressing demands of my relentlessly contracting and expanding bowels. The term “evacuation” once conjured images of large masses fleeing fires or hurricanes or nuclear disasters, blocking exits and major roadways. No longer. Now, images of the most messy and unavoidable consequences of human life have come to replace them. Images of excretion, humiliation and death."

Any dignity I had left in me certainly died at the point where they tried to insert an anal catheter  bearing in mind I couldn't speak to tell them if they had got the right hole or not!
Thankfully my mum came later that day with a pen and paper so I could finally " scream " that the nurses weren't doing such a great job and to get the damn thing out of me!

The tracheostomy caused its own problems as well, I had fluid on my lungs so had to have them suctioned out every couple of hours because I couldn't cough. One day whilst my sister in law was visiting she had to jump in and suction me because I was choking and there were no nurses around. (She was working as a community nurse type thing at the time so thankfully knew what to do with the equipment)

Two weeks later I was told I was fit to be moved off Intensive Care and onto a regular ward yet 2 days later I was back in surgery having my abdomen washed out again due to more pus build up.
A couple of days later I was deemed fit to have my tracheostomy removed, horrible experience, they initially tried to put what can only be described as a bottle cap over the opening. I started to panic and felt like I was suffocating, so was hooked back up again. An auxiliary nurse saw what was happening and just suggested taping my hole up. She spoke calmly to me and relaxed me and it worked. I was breathing on my own again. Next came the "test" a drink of blackcurrant juice to see if I could swallow correctly. They use blackcurrant because they can easily detect it if they have to use suction on your lungs!

There are probably a whole load of horror stories that happened in the 5/6 weeks I was on intensive care but I think I've blocked them out of my mind - no doubt my family will come to remind me when/if they read this.

Sunday, 18 April 2010

Tripping Out

After my operation I was kept sedated for 24 hours, to allow my body to recover, unfortunately my mind was still very much active and I can remember having the weirdest dream that I just couldn't wake up from.
I had Alexandra Burke's song Broken Heels on constant play in my mind with the vision of a spinning monkey's head with the skin being peeled from its face.

I can only guess that the song was playing on the nurses radio whilst someone was watching an Indiana Jones film, is it Indiana Jones and The Temple of Doom with the chilled monkey brains???

Now if this ever gets out into the public I'm sure it will be grounds to admit me to the looney bin!

Oops it is public - I'll wait for the men in white coats then!

Wednesday, 14 April 2010

The Next 3 Days ( and a week ) !

So I'll carry on.. where was I ? Oh yes, I had been discharged and my son had been moved to a hospital nearer to home.
I had to return to the hospital the next day ( which was a Friday ) for an injection to stop blood clots because I still wasn't fully mobile, my temperature was a little high but they put that down to the heating on the ward, they do like to keep maternity at boiling hot temperatures! so yet again I was sent home and a district nurse and midwife arranged to come and look after me.
I woke on the Saturday and followed the hospitals advice about scrubbing my c-section wound clean in the shower before the district nurse came to change the dressing, I was in agony with it - God only knows why people opt for this type of delivery, no way would I have a c-section again ( well not through choice anyway  ) Both nurses came on the Saturday and changed my dressings and took my stats, said I looked a bit peaky and they would keep an eye on me.
Sunday came, my mum and dad walked in the door and said I looked grey, OK I'll admit it I was feeling a bit crappy, district nurse came and wanted me to go back in hospital, I said I didn't want to because I'd only just got home, so she said she would wait to see what the midwife said. Midwife came took one look at me and said I was going back to hospital.
They admitted me to my local hospital's maternity unit and put through some very undignified tests, mums out there know there's no dignity in pregnancy but wowsers this was something else!
As it happened they couldn't find anything wrong related to my pregnancy, so decided to admit me overnight for obs until they could get a second opinion and I spent the night on the urgent care ward, that was like a ghost town, me on my own on a ward with 5 other empty beds and my own personal night nurse.
Morning came and the decision was made to take me back to the initial hospital, time to get prepped before being transported, had to have a central line put in my neck and another one in my wrist, oh the first 2 of many!
So, central line, oxygen tank & heart monitor attached, I was whisked down the motorway to what was to become my new home!

I settled into my new bed on the intensive care unit, private room with windows into the neighbours room & the main ward, apparently there was a window behind me to see the outside world but I never got to look out of it. By this time I was looking more pregnant than I did 3 weeks ago before all this happened!. An ultrasound scan showed a mass in my abdomen and under a local anesthetic a drain was inserted.

** people of a certain disposition may not want to read any further - also don't read whilst eating **

What came out of my abdomen is well and truly and unbelievably gross. 3 litres of the most foul smelling and pungent liquid known to man had been inside of me for God knows how long. This came out of me over the course of 2 days, but I was still feeling really poorly, so the next step was to open me up and see what was going on in there!

Friday, 9 April 2010

In the beginning

Well it's been a long time since I've blogged so there's a lot to catch up on.
Here we go.......

After a long time of trying I finally fell pregnant in October 2009 and was overjoyed, OK I was still Fat Girl Thin but other than that I had no real complications with my pregnancy until the fateful night of 29th March 2010.

My pregnancy had gone fine and I was looking forward to decorating both mine and my future child’s bedrooms when suddenly I was rushed into hospital at 32 weeks. I wasn't due for another 8 weeks, not till the end of May, crikey, surely nothing serious was wrong, I hadn't even bought a cot yet!
I spent the rest of the night hooked up to a fetal heart monitor, drifting in and out of consciousness, the nurses decided to send my husband home for some rest of his own and no sooner had he gone they rushed me into theatre! I’d got a ruptured placenta and both mine and the baby’s lives were in danger. The last words I remember was the nurse telling me she was going to put a catheter in and then an uncomfortable feeling before darkness.

I don’t remember much of the next few days because I was so doped up on morphine, but I can remember every time the nurse came in to check on me she’d give me another shot of the stuff, maybe she was on commission from her dealer to push as much of the stuff through me as possible – we may never know.

I did come around 3 days later, long enough to be wheeled into NICU to see my new born child and to find out that I'd had a son, 3lbs 11 ounces. I could only stay a while because I was in so much pain and needed to get back to bed. After a few more days on the birthing unit, they decided that I should be moved onto the regular maternity unit and along came a big butch nurse to remove my drain and catheter, "this won’t hurt…… much" she said as she smiled pulling the tubes out of me. OK I aint no lady and have been known to say a few choice words at times but even I surprised myself that morning with what came out of my mouth!, they obviously don’t adhere to the “ violence and abuse against staff “ posters that are put around the hospital, because I should have been thrown out after what I called her!

To get her own back, instead of allowing me to go to the new ward in a wheelchair, she made me walk along the corridor, get in a lift and walk along another corridor to my new room. Part of the rehabilitation process she called it. This was where the fun really started. Major incontinence. Due to having a catheter it can take a while for the bladder to start working properly again, and being pumped full of antibiotics can cause bowel incontinence. I had to change rooms to one that had an en suite bathroom because I kept making such a mess, and was put on barrier nursing because my temperature wouldn't go down and I had suspected MRSA. I was shitting myself too much for it not to be caused by an infection. So all my family had to now kit up before coming to see me. It's not easy trying to hug and love someone when you have to wear an apron, gloves and masks, - All I wanted was a hug, cuddle and a kiss to reassure me things would get better but nobody could give that to me.Not once did any of the doctors seem concerned that I  couldn't go and see my son again nor the fact that I looked more pregnant than when I was! My stomach was swollen to twice its normal size, I was leaking ooze out of my c-section wound but this wasn't a problem, they just kept changing the dressings.

Strangely one day I was being barrier nursed and then the next I was ready to leave hospital and discharged, and my son was transferred to my nearest hospital so that I could possibly visit him now I was going home....... how was I to know this was the last time I would see my tiny little baby - no he didn't die - but I nearly did...again!
To Be Continued...............