Very Good News

I passed my driving test!!!!  Oh yes!!!  

Today has been the best day for a very long time.  I took my driving test and was quite prepared for a fail but, no, I actually passed!  Not bad for a 61 year old methinks!  And to pass first time - I feel pretty bloody pleased with myself.  It's something I never thought I would do, I was always quite happy to have my own chauffeur and never dreamt circumstances would dictate I needed to do it, but, so be it, life dished the dirty and forced my hand.  

I have been out with Martin (who was probably shaking in his shoes!) tonight and he said I was alright and he felt quite relaxed by the end.  I have to thank Martin for the time he has given to me practising manoeuvres.  The manoeuvre I was dreading was reverse parking in a bay - and, sure enough, that's the one I got!! But miracle of miracles I got it perfect first time.  

This is going to make such a difference to Pete and I, we will be able to go out when we want, and hopefully this will make him want to go out.  I am going to do a few more outings with Martin and then take Pete - he has promised he won't get a rage on and will keep quiet!!!  You never know Adrian, one day we may rock up in Bristol - but not for a while yet!!! 

And that's it, I am still smiling to myself and have been all day!  The tears flowed from Pete when I came home and showed him my pass certificate! 

Wheeeeeee, North Devon here I come!!! 

As Good As It's Going To Get

No blog for over a week - this is because nothing at all has changed or happened worth posting about.  I think we have now reached the stage of 'this is as good as it is going to get'.  Pete makes no improvement at all, and hasn't now for some time.  He doesn't want to do the writing and trying to make words from sounds any more.  The only good thing is that, at least he is not going backwards.  He walks round the house with his quad stick and helps lay the table for a meal, but nothing else.  Each day is the same for him, he never wants to go out anywhere or do anything.  We get up some time between 9 and 9.30, have breakfast and then he either listens to music, plays Angry Birds on the ipad or does jigsaws (49 pieces) on the ipad.  Lunch is at 12 and then Pete goes on the bed at 1pm for a sleep.  He gets up again between 2.30 and 3 and watches tv. Tea is between 4.30 and 5 and then Pete is off to the bed again at 5.30. until 7 and then watches tv in the sitting room until between 8.30 and 9 when he goes to bed, he likes to be settled in bed by 9 and he watches tv. I usually go to bed between 10 and 10.30 and then we watch tv until 11 when he settles down for the night.  So, as you can see, every day is very regimented and always the same.  Pete likes to do everything at the same time every day, the only changes he makes is if I have to go out and then he goes on the bed again!!!  If I have to go out then I try to go whilst he is having his afternoon rest and be back by the time he wakes again, but sometimes things occur when I have to be out at different times.

Life certainly isn't a bowl of cherries but I think I now have to get used to this regime and, to be honest, I can deal with life as it is as long as Pete doesn't get any infections or anything to disrupt the routine.  I do, obviously, get very down at times and still, at times, embark on crying jags!!!! But not so much now!! 

So there you are, that is our life now and probably how it will continue for the foreseeable future.

I will continue to blog about my life as a carer of a stroke survivor and any progress made, but not so often - otherwise everyone will get very bored with the same old thing!! 

Not Impossible - Just Inexplicable!!

The district nurse came in yesterday with a supply of flip-flows(!!!) and to check Pete's op site.  I explained to her what had happened on Friday, expecting her to totally disbelieve me, but, no, apparently it can happen but she doesn't really know how or why.  She said if the entrance site is a tight fit and the catheter is shut off then it will find another exit.  I fully accepted and understood this - but, thinking about it later, it still isn't really the explanation as the bladder had not filled to the extent it needed to find another way out.  So, there we go, I still find it inexplicable and have no idea what was going on.  However, she said if Pete is more comfortable using the continuous flow leg bag then it is best to carry on with that and it won't be a problem.  I just have to explain at the hospital, when they do the first catheter change, that we did try it and it didn't work.  She also checked the site and it is looking nice and clean and doing fine.  She left some dressings to be changed weekly (although it has to be checked daily to make sure there is no infection or discharge).  So all is well again.  When Pete has the catheter changed after 8 weeks the hospital may want it left open - we just have to wait and see what they say.

Other than that, Pete continues as usual.

Epic Fail!!!

The infamous flip-flow has turned out to be an epic failure!!   But more on that in a while.

First, an update on how the week has gone.  Not well - just for a change!  As I said in my last blog, the nurse came Monday and dressed the op site, she put on a special small ring under the gauze which would help it heal and it was to be left on a week if possible, just changing the gauze on top.  Well, 6.15am Tuesday morning Pete woke me and showed me he had removed the whole dressing!! Why? Your guess is as good as mine!  Anyway I put another one on (she only left me 2 as that was all she had, they being samples which were very expensive) but by Wednesday Pete wanted it changed again and had taken the gauze off.  I explained it had to stay on as long as possible which he then accepted.  But he was also doing a lot of moving the actual catheter tube around, so, another lecture from me, telling him to leave it alone!  I said that if you put something through a hole and then keep moving it around, then the hole will just get bigger (think sticking a cane in soil and moving it round and round) and more painful.  Again, I think he accepted that and indeed, during the morning, went and got a pair of gardening gloves out of a drawer and put the left one on.  There was no way I knew what the hell he was trying to tell me - putting on one gardening glove quite randomly!!  His next move was to go and lie on the bed and close his eyes as if he was asleep so I guessed he wanted to wear it at night!  I can only assume this is to stop himself moving the catheter tube around in his sleep as it is difficult to get hold of with glove on.  It would be quite funny if it wasn't so sad.  That seems to have done the trick though as he has left it alone since.  The wound still seems to give him a lot of pain at times - he can be fine then moves slightly and that sets it off.  We try and keep it under control with painkillers.

One big improvement is that Pete has stopped using the wheelchair all the time and is back to walking around with his stick which is a relief as I thought he had decided the wheelchair was going to be his way of getting around for ever. 

So ..... the flip-flow!!  Today was the day it had to be put in and Pete seemed quite happy with this although I was a bit worried about it.  After a false start when I put it in upside down we got it in the right way and all was well.  I put it in at 9.30am and said he needed to empty it at about 10.30/11, yep, fine.  Now you have to bear in mind that the nurse told me that if it wasn't emptied then the bladder would fill and overflow through the op wound, being the only exit point other than the catheter, but this would not be a major problem as would just need to empty it and wash it around.  At 11am Pete went to open the flip-flow and empty his bladder - I went aswell to try and judge how much had gathered and how often it would need to be emptied.  All that came out was a tiny dribble, and his trousers were wet.  My first thought was that his bladder had filled and overflowed but ... In one and a half hours??? 

So onto the bed to see what was going on.  His boxers and trousers were indeed wet around the crutch area but the op site was dry!  So, not from there then, check the connection and that was also dry - what??  The only place it could have come from is the natural exit!!!!  But how does that happen?? We decided to attach a new leg bag and see what happened - that was perfectly alright, flowing into the bag continuously as normal.  I am now totally puzzled and I know the nurse is going to tell me that what happened is impossible!!  How come the catheter is in and the urine flows freely into a leg bag, but shut that off and it flows out of the natural exit????  It makes no sense at all.  My mind boggles trying to figure it out!!! 

As I said - epic fail!!!  Will wait and see what nurse says next week, although I already know - impossible! 

After Care

Following the op last Thursday, on Friday Pete was doing very well - he didn't seem to have any excessive pain and was quite happy.  However, that didn't last!!  By Saturday he started to go downhill and was in a lot of pain at the actual site of the op.  I looked at it and realised no one had given me any instructions on changing the dressing or anything.  I should have asked but got so involved with the flip-flow that I totally forgot - and the flip-flow is also another story that I will come to in a bit!  

I had a chat with The Oracle (my sister) and she advised I ring the district nurses for advice as there was no way the original dressing should stay on for 8-10 weeks which is when his next appointment should be.  She wasn't sure about the flip-flow and reasons for suddenly wanting that to be used.

The dressing seemed to be blood soaked and was starting to roll off a tiny bit by Sunday but I didn't dare touch it.  

This morning I rang the District Nurses and she said she would visit and change it and check it over.  She was here by 10am and was horrified that no one had told me what to do with the dressing.  She took it off and cleaned the wound (which is a tiny cut about half an inch long - bit like a stab wound, not that I've ever seen a stab wound, only on TV!!!!) and it is looking a bit red and angry, but she wasn't sure if it was just inflamed or is infected.  I have to watch it and if it gets redder or spreads to ring the GP for antibiotics. She showed me how to dress it when necessary and left some dressings.  She was also startled when I said he has to use the flip-flow, she couldn't understand this as he has been on continuous flow for 11 months and his bladder will have lost sensation and be like a deflated balloon!  We agreed the best course will be for Pete to empty it regularly - say every hour to start with, and then build the time up as he gets more used to it.  She said it would be fine to still connect the night bags and leave it open as we don't want to be getting up (means a lot of effort for Pete) regularly throughout the night - so that is the plan!!  The hospital gave me one flip-flow so I assumed that would stay on until he goes back BUT .... It has to be changed every week, just like the leg bags were!!!  I am so glad I mentioned it to her as hadn't really planned to.  She decided she will come in next week to check the wound and furnish me with a supply of flip-flows and, thereafter, I can get them on prescription.  So there we go - perhaps the hospital weren't as brilliant as I thought they were! 

I nearly cancelled going out Saturday evening but decided I really needed to get away for a while and Martin could ring me if he needed me.  I had a great evening with the Lovely Ladies with the usual gossip and laughter! 

And on we go - hopefully the pain will start easing soon for Pete and we can get back to the usual routine.

Operation Done!!

Well, actually, not an operation just a minor procedure - but a bit of exaggeration works for me!! 

Anyway the suprapubic catheter is now in place and, hopefully, Pete will be much more comfortable in future.

The day went exceptionally well, with no histrionics or anything from Pete.  We had to be there for 10am and went straight through into the ward.  I was allowed to be with him all the time (well, all except for when he went into theatre, obviously!!) which was good although we had to have the curtains round as it was the mens ward and females weren't usually allowed that far in.  They started on paperwork more or less straight away and then took his temperature and blood pressure and then he got changed into the very attractive gown (I'm sure you have all seen them) and onto the bed.  They had said he was last on the list and it may be about one and a half to two hours before he went into theatre.  But Pete seemed ok with this and then promptly went to sleep so that helped the time pass for him.  By the time he got on the bed it was about 10.40am so I settled in for a long wait, but the surgeons came in about 11.10am and he went in about 10 minutes later - so not long at all in the end.  I came home and got a call at 12.20pm to say he was back on the ward and was fine but the surgeons wanted him to stay for two hours so he couldn't go until 2pm, but I was welcome to go back and sit with him.  So back I went and he was dressed and drinking a cup of tea.  He then dozed off and on again until it was time to come home, and everything has been fine.  He has not complained of any pain and seems quite happy.   I have to remove the leg bag after one week and insert a 'flip flow' into the tube, this means he will let his bladder fill as normal and just flip the 'switch' to empty it down the toilet.  I'm not so sure about this as he has had a continuous flow catheter to make sure his bladder empties properly - I may have to consult the oracle (my sister!!) about this.  But it will be nice to be rid of the leg and night bags.

I am so glad today is over as it has been on my mind for days and I have worried about it endlessly.  Pete has not really shown me how he felt but I am sure he has also worried about it.

Once again I have to say the staff were fabulous on the Day Surgery Unit, their patience was endless and they kept popping in to keep Pete up to date with the situation and to make sure he was alright.  They were very professional but very friendly at the same time.  As an extra bonus one of the nurses on the Unit used to work on the ward I worked on, so a familiar face was welcome and we had a good chat and laugh, she always had a smile on her face and hasn't changed at all.

I'm out with the Lovely Ladies tomorrow evening - looking forward to that.