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!
Thursday, 19 August 2010
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 .
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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!
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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.
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!
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.
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.
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