Sunday 31st July

Cant  beleive I have not  blogged since the 21st - dont know where the time goes! Apologies

Bens doing good :)  He has been really fed up with not being able to be vertical which is understandable!

We had two hospital visits last week the first was with the urologists to make sure Ben was fit for surgery next week.  He is going into Barts on Wednesday for Cystoscopy and urethroscopy these will assess the bladder and urethra to see if they are repaired. If the damage is repaired the surgeons will decide best way forward for retraining.  If things are not as they should be they will make sure Bens perineal wound is sufficiently healed for surgery and perform  a urethroplasty repair. So come Wednesday you guys please blow all your positive energy towards Ben

Out second visit last week was with the orthopaedics.  Bens pelvis was xrayed again and they were happy with this  - the pelvic structure  is an inch or so off line but this should not be a problem.  There is an area at the front of the pelvis which has not repaired but is filling with scar tissue.  Again the surgeon said this should not be a problem as the majority of the strength and weight bearing goes through the back of the pelvis. Ben was put back from being vertical until his next appointment on 17th August - he was upset about this :((   The consultant also spoke about the nerve damage in Bens righ leg it was not very encouraging but we are not taking to much notice at the minute as it is still very early days and Ben continues to amaze the professionals with his progress - his nerve damage is all about timing and regeneration - we are working on his nerves being like little sperm rather than little slothes!  "Positivity is the key"

Things are going well at home.  Ben is sleeping a lot but thats fine sleeping is helping his to heal.  He is eating and drinking well.  The nurses are still coming in but arn't much good to be honest but I suppose a bit re assuring when they assess Bens wounds.  The wounds are doing really well - it will be great when they are healed - another thing for him not to have to think about.

We still have not seen the OT or the physio bitch!  We have been home a month and she has visited only once.  She has also been on holiday and will call me tomorrow.

Physio in the community seems shite - I am investigating private physio but to be more specialised in pelvic rehabiliatation - so if you are reading  this and have some spare time feel free to have a google and inbox me the details - thank you xx    (also considering inpatient rehabilitation so again please help me find somewhere)

You guys who have been working with Ben thanks so much it is really helping and much more inspirational for Ben to be working with someone rather than on him own.  If there is anyone else who can spare an hour at some stage to work with Ben please drop me a text - it will really help to get Ben strong ready for when he is vertical and starts to learn to walk again.  (07989 356491) you Bywaters boys cant get your arses over here if you like :)) (pretty please)

Ben is transferring from bed to chair a lot easier now and does so everyday.  He is spending longer and longer in the wheelchair and does his workout in the chair.  He is comfortable with a good four hours now.

Thursday 21st July

Hi all

Bit of a funny old week really, Bens fed and just wants to get up and walk. He is feeling a bit apprehensive about things which is understandable. We all being very positive and encouraging him all the way. Cant wait till he can put a bit of weight through his legs and get some rehab under his belt.

We now have a few more appointments in the diary - next Tuesday 26th at Barts for a pre op assessment and xrays.  Then Wednesday 27th Mr Culpan the pelvic consultan at The Royal London for a review, Wednesday 3rd August operation at Barts regarding all the bladder and urethral goings on - depending on findings they will decide their course of action - can only do certain surgery if the perinial wound it totally healed -  they wont go into an exisitng wound for obvious reasons - so just need to wait and see nearer the time

Bens still not comfy because of the rod and screws. Viability have suggested he try another Mattress so thats coming today. Told her we still need a pressure cushion for the wheelchair and that Wankerdom was meant to sort it but he hasnt -  lovely lady and has also ordered Bens cushion and that will also be delivered today.

Ben has important exercises to do at home in his wheelchair for upper body and legs, its really important he does these - but sometimes its difficult to find the motivation. I find myself moaning at him and to be honest dont have the energy for that.  :(  I want to try to get a rota going for the next 3 weeks (until he starts physio) . It would be great if everyday someone could commit to spending an hour working with him - that way there will be a routine in place and Ben will look forward to working out with his pals :)) (special treat will be a game of Fifa on x box without me wineing on and on and on) Naomi ex fitness guru Shaw you also on my hit list! lol

I am gonna facebook this and send some texts - if you can help and commit to a time and date over the next 3 week period please can you please text me

Thanks a bundle

Kerry

Thanks a millions

Kerr & co

Monday 21st July

Hi all

I know I said last week that I was going to try hader to keep this up to date - I did try but there just dont seem to be enough hours in the day!  If I dont get in the shower more often will have Health & Safety visit us :((

Bens doing ok - the sleeping on the side didnt last we forgot to take into account he has the stoma on one side and catheter on the other, so its back to sleeping on his back and ever decreasing butt :(

Last Friday we had ambulance back to Barts for EMG - the nerve conducting test for his right leg.  They have identified which nerve is damaged - next step is to have scan to ascertain what the actual damage is.  Awaiting an appointment.

The weekend was nice for Ben he had 'The Boys' round for a Fifa challenge which went on till about 2 in the morning I think - needless to say he was knackered the next day but they all had a fun time!  Thanks boys :))

Its been a bit stressful as its so hard to fit everything that needs to be done. Bens been quite uncomfortable again especially when sleeping - think its the rod and screws going through the back of the pelvis and as he is always on his back and has no arse its painful - especially when its time to sleep and there are no distractions.  Waiting for the viability specialist to call me today for some advice.

Occupational Health have promised the world but we have not heard a word for 2 weeks - still awaiting all sorts of stuff and am totally pissed off with latest WANKERDOM - Tim the Twat grrrrrrrrr
I wrote this hours ago then stuff happened so just gonna push post

xx

Thursday 13th July

OUCH OUCH CCCRRRRRAAACK OUCHER THAN OUCHIEST!!!!!

Yep you've guess it Bens x fix was removed today in clinic by pins site nurse and her box of medievil  looking tools - scary or what!!! Never seen anything like it or in fact heard anything like it - the sound of the first twist was like a breaking bone!

Well done Ben you coped so well all morphed up and plenty of gas and air - you are a star!

Bens x rays looked good but still some healing to be done so non weight bearing for the next month.  We have another appointment in 2 weeks just to make sure things continue to move forward in the right direction.

Ben is able to move from bed to wheelchair and back but thats about it for now - thats good enough :))))

He soooo excitied about sleeping on his side - we only in the door 5 minutes and this is what he was up to lol -night night Ben - sweet dreams - shame the bleeding nurse on her way round to man handle your wounds grrrrrrrrrr xx

Wednesday 13th July

Morning , :))

Really sorry for not keeping up to date there always seems to be something to do  - I will try harder

We are settleing in at home much better and know what needs to bo done it just dosn't always go to plan for one reason or another. Ben has his own private room (in our lounge!) fully equipped with all he needs - plus a massive TV at the foot of the bed and an x box loaned by Sam Pye - (I have banned bloody Fifa after 10pm)

We have three hospital appoinments with week, the first was on Monday with the trauma team.  They were pleased with Bens progress and gave some positive news with regard to his colostomy - they assured us thats Bens should have a trouble free reversal operation further down but he has to get better first :)) Brill news!

We have an appointment today with regard to the x fix being removed.  Ben had all his pelvic x rays taken on Monday so when we see his orthopaedic man today he will have all he needs to make a decision about removal. Lots of fingers crossed and send all your positive thought for it to be taken off today in clinic (ouch) Watch this space

Friday Ben has another appointment at Barts this is for an EMG which is a conductor test to assess the nerve damage to his right leg.

Ben is doing well generally, still has his ups and downs but that is only to be expected taking into account the trauma he has suffered to both physically and mentally. The progress Ben is making is still astounding his team.  Only on Monday were the radiologists looking gob smacked as he transferred himself with ease from bed to bed using just the strength of arms and arse shuffle:)) (new move for the dance floor in him red shoes boys)

Ben being home is good for all of us - its has its difficulties but we wouldnt have it any other way

Thanks everyone for their support

Kerry & co xx

OOPS THURSDAY 7th JULY (thanks Steve x)

Ben was supposed to go back into hospital yesterday to have both of his catheters changed and to have a cystogram and a urethrogram to check to
check the progress of repair.

We got a call from a Wankerdom (Urologist in training - Alexander) from Barts at 20.30 on Tuesday evening saying that the procedure and theatre time had been cancelled as his big boss Mr Junaid has said it is to soon - the urethral catheter needs to stay in for 10 to 12 weeks- this is a new ish procedure and there is evidence that the longer the splint is in place the better chance of repair and less invasive surgery later down the line.  Ok yep I get that but why the fffffff are you telling us this now? errrr communicuation? 

 I am not happy as my knowledge is that these catheters have a life span of 6 weeks and then there is a much bigger risk of complications and further infection. The ambulance was already booked for 0500 yesterday so I told Mr Wankerdom that we are still coming and want to see him.  I want him to look at Bens sites and answer all our questions as I am not confident having this catherter responsibility at home without better instruction. We went along to Barts, Wankerdom behave liked a complete prick - I told him what I thought - he wasn't happy but neither was I - requested he bring his boss as I have no confidence in their team (whilst in The London we had continous probs with this dept  - think its cos they are based in Barts and access to Bens notes is limited.

Mr Wankerdom eventually (awkward twat) came to see us with his boss (ha ha) Mr. Junaid and another partner in crime.

They listened, I listened and now understand, Wankerdom looked a bit like a scolded child and Mr Junaid was an absolute star, very professional and understanding -  apologised for his team.

Anyway that over for now ................................ Ben will not have his next operation under the urology umberella until 4 weeks time.

His urethral catheter has been plugged but we can open it up again if it looks like the super pubic is not flowing freely or the bladder is swelling.

We have lots of out patient visits/tests and stuff in the pipe line over the next few weeks but he will be staying home and ambulanced back and forth - WOOP WOOP

I know there are a lot of people who are asking to visit - thats cool but please give me a buzz first - thank you  

Thanks a billion

Kerry & co

xx lots of love xx

Still Thursday 7th - keep nipping off to the tumble dryer! lol

We had the Occupational Health guy here as well on Tuesday I think it was - he was great and has taken away a long list of goodies that we would like to have here at home to make things easier for Ben and us - lets see if he is as good as his word.

I think we will have a points systems for fairy wings and grades of competance - ummmmm yeh for achievement?  :))

The wheelchair we hired is crap - it is very narrow and had to be because of getting through the doors. It has made it impossible for Ben to shuffle from bed to wheelchair as his x fix is so wide and the chair so narrow (hope you understand) When he gets into the chair there is only about a cm either side between fix and chair and if he knocks it - BIG OUCH!) Its also a bit light and flimsy so Bens confidence is not good.

BUT - its ok that chair is being puffed away today -( bye bye chair) We have a new fairy in the making who has very kindly loaned us a super duper wheelchair which is absolutely perfect and just what we needed!!!  Ben is now able to transfer and sit without to much problem at all.  Thank you soooooo much the differance in Bens ability and confidence is huge. Thanks also for leaving Ben so inspired after your visit.  You guys are an absolutely amazing for Ben - Thanks xx

Just got off the phone to my lovely friend - thanks so much fo the new catheter bag which you had someone steal from the ward for me lol - all my little pilfers -

BIG NEWS - I think the powers that be are sick of the sound of my voice (not the first time)  Ben had his new air mattress delivered yesterday and it must be very very comfy as he is still sleeping - it makes you jump though as every ten minutes or so the the air pockets change their position and it sounds like a bleedin dragons breathin fire into the room ;))





I

Thursday 7th July

We are having the district nurse every day and have a lovely Moji she is really good with Ben, dosn't scrimp on dressings and saline and goes the extra mile.  She cleans and dresses Bens wounds really well and her catch phrase is "ohhh sorry Ben" every second - its so funny :))  Today she will be getting her wings I am just finishing stitching them together with golden silk thread :))

We have ben visitied by the physio - ummmmmmmmmmmmmmm not sure about her yet - she dosn't seem very confident and I am a bit concerned that she actually seems scared of Bens x fix - she hasnt seen one before and seems to want to leave well alone until after it comes off - we do have some exercises to do with Ben so not to worried yet as we still have instruction from The London physios whose expectation of Ben is much higher.

He's still sleeping :))

Thursday 7th July

Oooooohhhhh lots has happened and Sam slept downstairs with Ben last night so I am energised this morning :)) Its only just 10am and beds stripped, 2 loads of washing done, dishwasher emptied and filled, washing away, kitchen sorted, floors swept - taking a break to catch up with the blog whilst Ben sleeps xx

Ben is doing well generally very up and down emotionally but more ups than downs which is great.  Home is feeling easier and we are actually getting into a bit of a routine but try to work around Bens sleep patterns really - sleeping is good as he is healing and he's got planty of that to do.

I have stolen lots of the nurses stuff and am presently trying to win over the peope that we like :)  If they impress us they will be issued with golden wings and get to join out team- we are gonna take care of  Bens every need and  will be known as ' The good fairies (sorry boys)  All the other nob heads we get lumbered with will be known as 'The wankerdoms'. We are gona have some fun with the Wankerdoms ;))

Monday 4th July

Bloody hell cant believe its July!!!!!  There will be Christmas stuff in the shops soon  :0

Anyway we are home for now, its great to have Ben here, there were a few days when we didnt think that would ever happen again ................................... so we are the happiest little peeps in the world :)))))

As far as we were concerned transfer to Queens hospital was not an option for now or any future inpatient rehab so our Benno is back with us - being at home will I am sure only speed Bens recovery  :)

Its great but it is also very difficult as we all have to find new ways to do things. This stupid house really isnt big enough or practical  for our current situation  but we are making the most of what we have. Some furniture moves, little purchases and changes as the needs arise are making things easier day by day.

Its especially hard for Ben as he now been removed from the safety of  hospital back to what was 6 weeks ago 'normal' - this is the new 'normal' for now and Ben is trying to come to terms with that. He is also  learing to trust us (if he asks me to explain his drugs each time I administer them once more I will pour them over his head! - lol - only joking hon if you read this)

We had a quite weekend so that we could try to settle in  and get into a bit of a routine. Appoinments all sorted for district nurses, occupational health specialists and physios. Procedures now worked out and understood for getting new drugs, booking ambulances, ect ect.

The days  fly by as there is just so much to do and routine is absoluely impossible! I am writing this at 0600 on Tuesday from the sofa downstairs and my alarm has gone off for another lorry load of tablets to be given  ( thanks Rachel for sleeping on the sofa on Saturday - I got some much needed kip)

Bens has a hospital bed which is great but the mattress is shite - in hospital he had an air mattress - the district nurses ordered Ben the sam but it was delivered with a lower grade foam matress.  I have been trying for four days now to get this sorted as Ben is really uncomfortable with pillows under his butt and legs and spine :((     Bleeding joke community services no one knows what they are doing are must talk to themselves cos they definately dont speak to each other! If they just say either yes or no - that wasy I can sort if out myself

The nurses are booked in daily for wound care and dressing changes - again they are absolutely crap I could do a better job myself - infact I will when I have nicked enough of their stupid prescious bloody dressing and saline. Dont think they like me much but dont give a shit to be honest,

Lets hope today is better with the occupational health and pysiotherapist - we are lacking in such basic equipment - ummmmmmmm this will be interest but I promise to be good ;)

Not finished and no idea if what I have written makes any sense as not read over - fell asleep with laptop on lap.gonna publish and check later.

Gonna go to sleep

Bye for now zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz xx

Thursday 30th July

Ben phoned in the middle of the night in a panic as the nurse doing the obs noted in his records that he has a temperature :(   He is worried they will keep in him!

David went over first thing and they told him all stations go ambulance coming at midday - blimey thats fantastic news we can harldy beleive it!  So much to sort and pack we have been living here for virtually 6 weeks now - dont panic he says - lol - is it too early for wine its 10.30am???

Then a call from Dave "ok dont worry but" - la la la the doctors have done their rounds and have decided that it would be best if they do a blood test to be on the safe side - dont want to send him home with an infection.

Ok so the ambulance is coming back at 3pm and results will be back at 2pm - like hell they will - la la la

Poor Ben getting himself in a right panic thinking they just dont want him to go home ........................

We eventually found out we could come home at about 5pm I think - Did you hear my screams of delight??? (embarrassing the old boy next to Ben dropped his falsies) (joking)

What a day - poor Ben yo really went through all the emotions today didnt you.

Home at last ahhhhhhhhhhhhhhhhhhhhhhhhhh wonderful - perfect, couldn't be happier  :))))))))))))))))))

Sam and Sam you made the house perfect - thankyou so much xx

Ben welcome home we are so proud of you - lots of hard work ahead of you but we have every faith and wil support you all the way  xx

Lots of love

Mumsa, Dad and Sambo

xxxx

Wednesday 29th June

Found out late last night that Ben wont be able to come home as he has another infection in his pin site.  The microbiologist and orthopaedics want him to stay in hospital until after he has had his treatment at Barts next week.

Oh dear dont want to be the one to deliver that news in the morning!

On the doctors round today Fran from Trauma know nothing about my update.  Off she popped and came back much later.  To Bens delight it has been decided that once IV antibiotics are finished he can come home - ok so back on track for tomorrow again

This is such a rollercoaster think our heads are going to explode soon - so will he, wont he, will he, wont he, will he, wont he,

and so we wait ..........................................

Poor Ben :((