RNOH: Surgery full marks , Transport 1 out of 10

17th January after a protracted 3 year wait, Hubby has at last got a slot to replace his worn out left knee. We had his first attempt to get this operation done cancelled at the last minute back in 2010, due to the local hospital deciding that they could not deal with Hubby's other disabilities. The decision was of course taken after sitting on the waiting list for nearly a year all told.

So after much debate as to the benefits of carrying out such a procedure in some one who can not and is not likely to walk, it was decided to carry out the procedure for the alleviation of pain and to get Hubby putting some weight through his legs again as he was able to do when he was first sick. Being able to stand using a standing frame or tilt table is extremely beneficial for some one with a spinal injury as it helps with the processing of bodily functions.

RNOH Stanmore as usual with some negotiation, reluctantly recognise that Hubby needs someone with him to look after his pre existing problems. So they manage to source us a side room rather than a bed in an open bed ward. Our journey there was great as our local GP's made sure we had the appropriate type of ambulance with a technically qualified crew, minimum grade EMT. The usual first aid plus trained transport crew being of little use to me if we have an emergency Autonomic Dysreflexia attack to deal with.

When we arrive we find out we have been assigned to the Duke of Gloucester ward, which is very near to the EAT Restaurant but accessed by a linked walkway that is open to all the elements.The room is pleasant enough , has a TV, sink and room for wheelchair plus bags, and blow up mattress for me. I check with the staff as to how they want me to work with them. They don't want me emptying stuff in the sluice, so they will do all the urine bottle rinse outs for me, with me filling in a form re the amounts colour etc for them to officially record. Can understand this different requirement as the walk to the room would involve walking across the open ward which the other male patients might find disconcerting. They very kindly agree that I can use the staff room toilet which will save me walking back into the main hospital down those unsheltered walkways in the dead of night.  We are met at the ward by a friendly face for me, Jackie the ward sister was at some of the  Hospital rebuild project meetings I had previously attended.

Having passed to the staff the detailed care plan that I have developed for Hubby, just in case I am ever incapacitated , I receive quite a few compliments regarding its contents. Very gratifying to receive such from professionally medically qualified people, I must have learnt something I guess.

Hubby's Spinal Injury Consultant visits very soon after our arrival to see whether Hubby wants his Baclofen pump adjusting to deliver more medication while he goes through the procedure which might set off his very bad spasms. Hubby decides to try and manage as turning up the dose can affect his breathing and arm function.

Friday, Hubby leaves the ward  at about 10am to go for his knee replacement op. It is freezing cold outside and he is wheeled along unsheltered walk ways back into the building that holds the theatres. About 1:30 pm I get the call that I am needed in recovery as Hubby is giving the staff hell. Apparently he feels they are moving his body about like he is a piece of meat rather than asking first. He is also I find out desperate for a urine catheter which might be the actual source of his irritation, and verbally combative behaviour. I sort this and we get him back on the ward as soon as possible. The operation went really well and nearly straight away I am  able to move his knee, which is an absolute god send as he hates having his catheter done when lying down, preferring to sit over the edge of the bed which to do I have to bend his knees to swing him into the up right position.

Saturday and Sunday we meet the weekend on call physiotherapist but Hubby is not feeling well enough for her to get stuck into some passive exercises yet. We explain it is not such a problem anyway as he is bending his new knee on a regular basis anyway because of the way I have to look after him. Monday we meet the ward physiotherapist briefly, talk to him about Hubby's position and disabilities but no actual physiotherapy is carried out by him.  Same on Tuesday and Wednesday , we are not surprised as we have come across many  that if you mention spinal injury they will do anything except actually work hands on with the patient. If I had anything to do with this type of operation again and that it involved a Spinal injury patient I would recommend that the rehab be carried out by specialist spinal physio would are not afraid of what Spinal injury means but have enough joint mobilisation knowledge to give rehab on a joint replacement. Not such a loss in this case for us though as I carry out a lot of passive movement with him as part of our daily routines, we just feel a bit short changed that's all not being treated the same as the able bodied patients on the ward.

Hubby recovered pretty well , although because of the terrible food at RNOH I did start to become a bit concerned that he was surviving on baked potatoes and apple crumble as he could not stomach anything else on the menu. He had become dehydrated as his urine colour and amount told me so. We were therefore pleased to be told he could go home on Wednesday afternoon. We explain to the nurses that he needs an ambulance that could take him in his wheelchair but need a crew with at least one member that is EMT qualified , just in case of emergency and with the weather being so bad. So the nurse orders a technical ambulance for our journey home.

On the Wednesday we had to get Hubby's Baclofen pump refilled then after that we were free to head home. We got organised making sure we were all packed and ready . We let transport know that we are ready just in case our allotted crew is also ready a bit earlier than we had ordered.

From here on things went awry ...

feedback from the transport office was not accurate and led us to believe the type of crew requested was not being made available. Therefore trying to be helpful I say we will risk it with and ordinary crew as long as the crew are happy taking the risk especially in light of the weather closing in. Time was getting on, people were dithering , Hubby by 2pm had , enough and pulls the plug, which causes knock on problems because of the high demand on beds at this time. The Out Patient Manager whose department transport comes under, comes to apologise to Hubby, but he by this time is in no mood to listen. Apparently we were allocated the type of ambulance we had requested but it got delayed due to the weather , not the info conveyed to us. I had a quiet word with him on the side, telling him I was not impressed with his departments communication skills or management in a crisis situation i.e. the weather. I was thinking back on what we used to do in my traffic control days, where keeping the customer updated was paramount or else the power stations would not have had enough coal to burn.

The next morning the manager must have taken the decision that since we were willing to risk travel without an EMT the day before it was totally okay to provide a small mobility type van to transport us home. As soon as it showed up I knew it would be too small to fit electric wheelchair + special mattress + luggage and also have room for me to look after Hubby. Another hour delay , so we negotiate putting Hubby back on a bed for a while while we wait for a more suitable vehicle. Eventually a mini bus type vehicle turns up with just a driver, no EMT , but we need to get Hubby home so we risk it.

Thankfully it was an uneventful journey and we did not need to divert to the nearest A&E. Very annoying that in a hospital that deals with people that suffer from the potentially life threatening Autonomic Dysreflexia every day the transport department do not treat the potential risks in a sensible way.

RNOH Feedback scores :

Surgery 10/10 - Nursing 9/10 - Rehab 4/10 -Accommodation 3/10 - Food 1/10- Transport 1/10

Surgery Day

08:00 in the morning yesterday, Friday 17th August, the Anaesthetist arrived to take a very detailed medical history. So Hubby asks me to do the talking as he gets a bit wary of repeating his story of all the operations since 2007, his allergies and particular on going medical difficulties. Nearer to 09:00 the plastic surgeon sent his under study in with the consent forms to sign, while he stayed in the office next door. Odd to say the least, OH not impressed.
Just after 09:00  the porters came to take Hubby to theatre. Before he goes we label his left knee as "fragile" to remind the team to take care so his knee does not blow up with swelling.

While he is in theatre, I go do some laundry  and talk briefly with the accommodation manager to obtain a room key just in case I cant manage to  continue looking after Hubby during the night due to his new bed turning regime. Currently live off 5 hours sleep a night, anything less may become too detrimental to my health. 

11:30 meet Hubby back in recovery. He is pale, groggy but awake and surprisingly quite "compos mentis". He has two drains attached to his back wound. syphoning off the blood into two sport drink sized bottles.  They have also given him a huge 1 litre bag of IV Hartman fluid, which worries me some what knowing how his one kidney will eventually over the coming while react to that, over producing urine. So to be on the safe side I give him a catheter to drain off any excess. No reaction yet, only a normal amount. Can be potentially serious not to manage as can result in an Autonomic Dysreflexia attack. Whilst in recovery we see one of the other surgeons giving some feedback to his patient re the success of the operation, Hubby is slightly irked that he is given none.

12:10 we arrive back on the ward. Negotiate straight away re removal of the oxygen, the extra fluids and the 'flotron' boots which are by now causing painful spasms in his leg. We discuss with sister the care regime regarding turning as Hubby has to avoid laying on his back . We try putting him on his left side and he finds it extremely painful , so the plan is amended to 4 hours on right side alternated with an hour on left side. He also negotiates a special position for eating as he cant eat when laid down, his muscles having been weakened by his spinal cord injury means he has to have some of the gravity of sitting up to eat his food. By this time lunch is on the ward, fish and chips. It was horrible, re heated battered fish and the chips well Hubby took a bite and spat it straight out as it exploded in his mouth, being too powdery and dry. I make a dash to the hospital canteen and pay for some fresher looking fare which he managed to eat. They take your benefits away from you because you are supposed to be fed and watered in hospital, what a joke.

15:00 I decide to do another catheter, thank goodness I did, I was right, his kidney has kicked in,  huge amount of urine collected and again at 18:00, 23:30 , you know that physics law of gravity what goes up must come down, well here's a new one 

what goes in must come out....

Emergency Fetch the Doctor - Autonomic Dysreflexia

Yesterday, Monday we were expecting a quieter day following a fairly full day on Sunday. All went well until half an hour after Hubby was given a new type of antibiotic, all hell broke out.


I'm sat there having an afternoon doze and all of a sudden Hubby goes into a massive upper body set of spasms, shouts out in pain. They were so bad he thought he had damaged his left arm. I knew it was serious so get the nursing staff involved, who try and take his blood pressure but cant because of the spasms in his arms and chest. They end up attaching the cuff to his leg to get a reading. 


Oh shit it was up to 250/90 Autonomic Dysreflexia was surely indicated, a medical emergency. Doctors were called. We have the GTN spray but decide to hold off using as it can cause as many problems as it solves, diving blood pressure onto the floor. Myself and the nursing staff go through the procedure of making sure there isn't another pain source that is the reason for the attack, I empty his bladder just in case. Always seems like an age when you are waiting for someone to come that can do something positive. Hubby's throat was beginning  to close up, pains in his chest, his head felt like it would explode, feeling nauseated, frightened, shouting out every time a wave of spasms hit. 


Eventually the Doctors arrive, give him something for the pain, some anti histamine, oxygen, paracetamol drip. After about an hour his blood pressure comes back down to more normal levels and the more serious possibilities of bad outcomes lessen. Stroke, Cardiac Arrest etc.  They take some arterial blood  from his groin, it is quite difficult to locate and take. 


Diagnosis:  Anaphylaxic shock from taking the anti-biotic which brought on Autonomic Dysreflexia. 


He is okay now as I write although totally wiped out by the bad experience. The staff on the whole were great, I think it was a bit of a wake up call though, as it re-enforced the importance of not leaving Hubby on his own, and justified me being here. He might not have been able to push the call button had he been on his own. 


Well done RNOH staff. 

The Ongoing #NHS Treatment - A Modern Thriller-Farce Worthy of Hitchcock

If it wasn't so serious it would make a good plot for a Disaster Movie or a thrilling episode of Holby City.

Update:

Hubby has a now confirmed level 4 pressure sore wound on his thoracic spine. We travelled in an ambulance all the way to Stanmore on May 4th. [1 1/2 hours each way ] to get a MRI scan on Hubby's back, due to the local services not being able to co ordinate the making available of the Baclofen Pump hand held computer to be available , should the magnetic interference of the MRI send the implant in Hubbys body into a fault setting. The guys at Addenbrookes will not let Peterborough play with their toys, even though they come under the same authority. Sod what is best for the patient, lets play politics. Anyway MRI shows the wound is at bone level so it is a confirmed level 4 + wound.

During the following two weeks awaiting for a telephone call from Hubby's consultant at Stanmore  re the results, Hubby develops a large [ 25cm horizontal length x 15cm high/wide x 8cm deep ] mass / swelling above the wound. looks like he has developed a large hump on his back. So I make a rather worried call to the local GP, who to his credit makes a home visit on 18th May, sends us to the local hospital for an x-ray to rule out further damage to Hubby's spine. Well this is where it gets really farcical , we have to have an ambulance with a travelling paramedic because of Hubby's condition and being at risk of developing Autonomic Dysreflexia. The local managers in their infinite wisdom have told the crews that everyone who has this type of ambulance must pass through A&E first for them to do an internal referral. So we do get our x-ray but end up staying at the hospital 8 hours door to door for something that should have only taken 3 tops. REMEMBER HUBBY HAS A GRADE 4 PRESSURE WOUND not a good thing for him to be immobilised that long, no food or drink offered until it was nearly time to get into the ambulance to go home. So I had a terrible time when we got home , trying to calm him down as he was so upset with the way he had been treated, he was in unbelievable pain and I had to deal with a near AD attack. Good news though no further breaking of bones but still he is left with an undiagnosed problem on his back.

The Following Week:

We finally get a telephone consultation with the Stanmore Consultant, giving us the name of the spinal surgeon and the bad news that Hubby's case is not thought to be an urgent priority, they have no beds therefore he is going to have to wait at least another two months or until he becomes so ill that his life will be at risk. So if we have had the money and been able to have treatment in the USA whilst still on holiday we would have been treated straight away as they deemed it so serious, but in the UK it is okay to have an open large wound on your back for six plus months.  I am getting rather frantic now and have asked the local GP's for help, as I am struggling to cope physically with all of this as I have a very painful undiagnosed trapped nerve in my lower back. [ My assumption as to what is wrong] . Then we get the old chestnut well put him in a nursing home, sounds easy does it not. From what I have read there is a national shortage of specialist spinal injury nursing homes and they are not keen on taking on someone with a medical problem for which they would usually send that person to a hospital with.

Why Do I think he should be admitted now / immediately:

1. Skin seems to be starting to become reactive to prolonged use of anti biotic, red blotches on face, skin burning like reaction underneath pain patches.
2. Skin redness / erythema under dressing edges.
3. Malodor coming from wound.
4. Wound is now bleeding [where is blood coming from ?] and becoming concave.
5.   MRI scan shows wound is at bone depth.
6.  Wound not responding to dressing treatments, necrotic tissue still in place.
7. Time : initial wound sustained on February 6^th – no further on with the healing process nearly 4 months later.
8. No trained carers / nurses at home except for wife, and short dressing change visits from district nursing team, to attend to extra nursing care needed at this time, extra pressure relieving movement needed.
9. Periodic episodes of :- shakes like chills, sharp pains in head, blurred vision, increase in neck spasm, stomach cramps, tightness in chest area – not sure whether purely SCI related or pressure sore related, seems to have become worse lately.
10. Perceived extra loss of function / strength in arms and hands especially left side.
11.  Very lethargic and depressed . Can not seem to get any significant / beneficial periods of sleep.
12.  Has started to take small amounts of Diazepam again to just get through the day. [average 3mg / per day]
13. Pain levels have increased from background everyday pain that he lives with as part of SCI.
14.  Although persevering with the use of the alternating pressure bed, it causes him pain as it inflates / deflates under his back, and vibration sets off painful spasms in his legs. Extremely difficult to use the usual measures of side lying, as the pain in his shoulders becomes unbearable and his lack of full strength arm / hand function makes it very difficult for him to get himself a drink or do anything in bed for himself. So adding to point 11.

The Farce of this Week.

The Surgeon wants Hubby to have a CT scan locally to get more pictures of the bones at the wound site. So with the GP & the local Disability Advisor we organise the transport, remember Ambulance with a paramedic on board for safety. This was booked under the 2 hour urgent ambulance as there is no provision in the hospital transport procedures for this type of transport, you have two choices a transport ambulance crewed by first aider+ trained staff or the full monty an emergency ambulance crew. They didn't turn up, we tried again yesterday, they didn't turn up. They have no idea what this does to someone who is already very ill. He has to wear clothes that he wouldn't have to at home, all of which add to his pain levels. I have to get him dressed, even with log rolling that is painful for both him and me. Then he waits slowly getting more and more stressed about what is going to happen.  IT IS UNBELIEVABLY CRUEL.

We will try again on Thursday, the Disability Advisor has tried to explain the situation to the East of England Ambulance Service, lets hope they find some compassion. Today we have to make the trip to Addenbrookes in a private ambulance to get Hubby's Baclofen pump refilled, an hour each way in an ambulance with A GRADE 4 PRESSURE SORE. We tried to get the procedure moved to Peterborough but again no you cant play with our toys.

WHEN WILL THIS FARCE END? NHS WHEN WILL YOUR SYSTEMS PUT THE WELL BEING OF THE PATIENT FIRST? ARE YOU RUNNING THE SYSTEMS OR ARE THEY RUNNING YOU ?

Please Discuss is the wait for a Baclofen Pump op cruel ?

Introduction

This paper has been written to initiate a frank discussion amongst interested parties. It is written from the user’s point of view of the current medical pathway involved in securing the right to have an Intrathecal Baclofen Pump fitted.

Problem Statement

The current system is not patient centred and lacks an individual risk assessment approach. The insertion of an Intrathecal Baclofen Pump (IBP) is considered to be an elective surgery and therefore the waiting list system seems to have no method by which it can weight according to urgency. The current system, I advocate,  having sat and watched someone endure the wait is cruel, verging on barbaric, as it shows a patient how good their life could be then sends them home to cope with their condition for multiple months.

Current Medical Pathway

IBP surgery is considered to be an option for those patients that suffer from life limiting spasticity / spasms, which have exhausted all other options to medically control their symptoms. The other options  will include various medication trials and some physiotherapy options. Patients will have various long term illnesses, including Spinal Cord Injury and M.S. Therefore will already be coping with a non optimal life quality.

Stage 1:           Trials of various medications. This can take years to get the right mixture of doses of various available chemicals. The requirement also varies as the condition progresses. Oral medications can fail due to various reasons, toxicity, bad systemic reaction to drug, condition not improving with use of drug(s) and other contra indications. The oral medications used to combat these symptoms are often being used outside of their primary licensed use; many are very familiar to those in Psychiatric medicine.

Stage 2:           Clinicians if having failed during stage 1 to control a patient’s condition will at some undetermined point make a decision that a test dose of Baclofen is efficacious and can be injected into the spinal column’s intrathecal space. After detailed discussion with the patient as to the pros and cons of such a medication delivery system. If the test dose of Baclofen produces a good outcome the patient will then be sent home to wait, firstly for the outcome of a NHS funding application, then a suitable surgery slot by a Neurosurgeon. This wait can be 4-7 months or more. 

Mr.TDB: A Case Study

Patient TDB is a 66 year old male, who in June 2007 contracted a Staphylococcus Aureus infection which led to spinal cord damage in region C3-5. This left him a partial, incomplete, non-traumatic spinal injury. As with many cases, the first year after injury was spent in various hospitals followed by adjusting to life in a wheelchair.

Spasms and Spasticity start to become a problem in mid-2008. Over the next 3 years, various drug trials were carried out, including, 3 separate Baclofen trials, Dantrium, Gabapentin, Pregabalin, Anatriptalene, Diazepam, Sativex and Tizanidine. All of the drugs either had little effect on the problem, caused breathing difficulties, or in the case of Baclofen caused agitation and unwelcome personality changes.

TDB first had the idea of the Baclofen pump floated with him in late 2009, but at that time was not feeling strong enough to under go another round of surgery with all its inherant risks and prefered to persevere with more oral medication trials. By the end of 2010 his spasticity was beyond unbearable and he finally agreed to take a test dose of Baclofen. The test dose was given to him at Stanmore in January 2011. It was found to be medically sucessful, but TDB was not totally happy with the results and took some time out to decide to go ahead.

By the end of March his situation has become so deplorable that he agreed to have a referal for surgery. 3 months in agony at home passes until he finally actually gets to see the Neurosurgeon on 27^th June for an intial consultation. Then another 3 month wait until a pre operation assessment date 12^th September. TDB is by this time too ill to make the journey , the operation on the 21^st September is cancelled due to the hospital needing to take extra measures and organise the transportation. His operation was finally carried out on October 19^th.  7 months wait in total from referal letter to operation.

This 7 month wait was inherrently dangerous, cruel and a gamble with this patients life. Despite many communications from the patient’s sole 24hr carer, giving many warnings as to the deterioation in the patients health condition and mental well being, as well as the daily physical dangers endured by his sole carer, all were ignored. No account in prioritising this wait was taken as to these facts:-

·         This wait was on top of a 3 year campaign to find an answer for this patients symptoms.

·         Patient did not have medication in place that was in any way controlling his symptoms or pain.

·         Patient was relying on 24hr care given by his wife with no outside support.

·         Patient was endangering his carer by not being able to be hoisted due to pain, expecting hourly intervention during the night because of unremitting spasms and pain.

·         Patient needed regular physiotherapy intervention to straighten spasming legs, this very physical activity being carried out by his wife.

·         Patient was becoming very depressed to the point wanting to take his own life, again his wife as sole carer had to talk him down from said episodes.

·         Patient was getting into progressive sustantial medical difficulties, with breathing, low & high blood pressure , increase in pain, further loss of function, crushing effects from spasticity, and  loss of appetite to name a few.

·         This patient already had a standing letter inferring that funding was available from the PCT , because of previous funded medication that he was taking. It took only a few phone calls by his carer, to get the new updated letter from the PCT. This patient was already under the NHS Continuing Care regime. In this particular case, funding decisions should not have delayed matters as it did.

What needs to change

If funding from the PCT is a possible issue this should be cleared prior to any patient having a test dose of Baclofen, as it is cruel beyond believe to show a patient how good life could be and then send them home to wait. The funding letter from the PCT should take a week maximum having being cleared before hand.

The waiting list needs to prioritise the medical waiting time taking into account, home circumstances, current medication sucess, and how ill the patient is. A risk assessed , patient centred approach must be taken to ensure better outcomes in future.   

Summary

Making an already very sick patient wait 7 months in this case, for an operation that as far as he was concerned was anything but ‘elective’, is barbaric, inhumane, cruel and has no place in a modern health system. This medical pathway must be reviewed and changed before someone ends up dying while they are waiting either through suicide or ill health.

Appendices & Further reading

http://medtronic.com  information on what a Baclofen pump is.

http://spinal.co.uk        general info from SCI charity regarding.

http://aspire.org.uk      general information SCI

http://mstrust.org.uk    general info on spasticity / spasms.

http://www.ninds.nih.gov/disorders/spasticity/spasticity.htm  US site with useful info.

Already down, Life just loves to kick you again.

As if things were not bad enough trying to cope with the day to day struggles of being a 24hr carer of a very sick husband, I get word this week that my father has terminal lung cancer. Also that my brother who lives with him has been made redundant.

My father being ex RAF is coping quite well with the news and says as long as they control the pain he will be fine. I am left wondering if his service in the RAF is somewhat to blame as he and his colleagues were on the Christmas Islands during the atomic tests of the early 60's, told to have their shirts on and turn their backs to the blasts as the bombs imploded under water.He has a number of photographs of mushroom clouds in his collection. So that along with his heavy smoking which he gave up 6 years ago, means that he will die gasping for breath as his father who died of emphysema did before him.

With treatment they say he has 10 months left at the most. So I hope I will get stuff sorted here sufficiently so that I can spend some time with him before he passes.

News on the home front is about the same, Hubby should really be in hospital right now as he is so ill but every one in the medical profession shrugs their responsibility, saying if it gets too bad go to A&E. We seriously considered it last Friday as he was in so much pain and his breathing when sat upright is very poor. Then we thought it through, we would have to sit in A&E for up to 6 hrs while they decide to admit him or not. I would have to constantly tip him back in his wheelchair to maintain his breathing and blood pressure as putting him on one of their trolleys would be dangerous as there would be no way to control his spasming legs on such a narrow  bed.Then who at our local hospital would be qualified to help him, we have seen the pain specialists before they were useless and there seems to be no oral medicine he can tolerate to ease his spasticity short term. So we decided to make a 'hobsons' choice and stick it out at home as long as we can.

Monday I will have to get him across to Addenbrookes an hour away to see the consultant surgeon and ward manager. I am kind of hoping they open their eyes to how sick he is and admit him pending his operation on the 20th. But no doubt I will be left to struggle on as usual, because they don't give a shit about the holistic well being of their patients or those who care for them.

May be some light at end of very dark tunnel

Well what a week, last week was.

We got an interesting phone call from the city housing people to say there may be a fully accessible bungalow available soon in one of the prettiest villages near here. It has not been fully finished off yet so if we are successful, there will be many cat1 waiting list clients who will want, we may get the chance to have a say on what accessibility things we need to make it work for us.

Then on Saturday we received a letter to book an admission for the vital operation that hubby needs to get our lives back on track. I rang first thing on Monday and was somewhat disappointed as the earliest they could offer was 21st September, not long you say. Well it is when you are existing in a living hell, full of pain, no sleep, cant eat properly and feel like your own muscles are crushing your insides.

Then on top of that he has a urine infection that they will not aggressively treat until he is  in hospital prior to his operation. This makes him even stiffer and his spasms even more severe. It also means that 3am in the morning I am often found giving him another urine catheter.

Grit our teeth and get on with it as usual as no one in the medical profession, listens or hears our cries for help, no one gives a shit, and don't we know it.

Ground Hog Day...

You could re read my previous blog over and over again as that is life here in our household. Relentless same thing 7 days a week , no rest days for either hubby or me. Particularly bad day today, feel like walking on egg shells trying not to set off one of his outbursts born of pain and frustration. He is having one of those particularly bad days, "if they (medical profession) don't do something soon I wont be here for them to do anything" intimations of suicide, I listen to his angry words and wonder yet again if I could do more, feel like it is my fault, that we cant make anyone listen and most importantly act.

It was back in March over 4 months ago that he made the brave decision to let the medical profession operate on him again, to insert a Baclofen Pump. He has lost all faith that anyone can help him live again. His is not a life worth living at the moment, every breath = pain, every movement = pain. So here he sits in our living room watching TV (well looking through it lost in his own thoughts) sitting as still as humanly possible, waiting for the next painful spasm to nearly throw him from his chair. While I talk to my only companion this computer, trying to find answers to the unanswerable.

Why are people like Hubby left in the community in such pain when there are medical interventions that can and morally should be done urgently to stop them from going out of their minds.    

I'm here but where are the professionals ?

August 1^st  2011:

00:20    Go to bed. Manually lift into bed. Work on TDB’s legs to get him settled.

00:45    Finally get to lie down myself.

02:30    Reposition TDB’s legs.

03:30    Reposition TDB’s legs.

04:20    Reposition TDB’s legs.

05:30    Needs Catheter doing early. Sit up on edge of bed. 500ml collected.

07:00    Reposition TDB’s legs.

08:10    Get myself up.

08:30    Get TDB up. Make coffee + give him 250ml of Cranberry juice.

09:00    6 sprays of Sativex taken.

10:00    TDB does not want anything to eat. Wash and give shave. Sitting up difficult, breathing a struggle, hip spasms bad. Put him back to bed to work on his legs for awhile. Get him back up 11:00.

11:45    Catheter done, darker yellow 250ml. Stretch legs out again in wheelchair. Pain levels quite high again today, hip / leg spasms bad. Took 2mg Detrusitol.

12:15    Cook bacon + egg sandwich which he manages to eat.

12:40    Stretch TDB’s legs. TDB watching TV trying to keep as still as possible to avoid pain.

15:00    TDB put back to bed. Reports bladder snatching like he needs to go to toilet. Exercise given on bed. Takes 2 Neurofens.

15:30    Start to prepare dinner, corned beef stew.

16:30    Got TDB out of bed. Exercising him before hand. He then took 5 sprays of Sativex. Says he is coping with painful snatching of leg / hip muscles today but feels strong enough to deal with.

17:30    Catheter done early due to snatching feeling in bladder.

17:45    Dinner served.

18:30    Pudding .

18:45    Leant forward as feeling out of breathe and tight across chest. Put back again will watch for further signs of distress.

20:00    Detrusitol 2mg. Feeling flushed. Antibiotics taken.

21:00    Extra Catheter, mid yellow 250ml. Both go to lie down for a couple of hours.

23:20    Get up. Brush teeth get tablets ready.

00:00    Catheter done, mid yellow 150ml.

August 2nd 2011

00:25    Tablets taken. Back to bed.

00:40    Work on TDB’s legs, get to bed myself.

01:45    Reposition his legs.

03:30    Reposition legs.

06:00    Catheter 350ml mid yellow.

07:00    Reposition legs.

08:10    Reposition legs get up.

08:30    Get TDB up after working on legs. Says back & groin pain very bad today. TDB needs to wear shorts today due to cleaner coming at 10am.

09:00    Coffee & Fiber orange drink for TDB, bowel day.

09:30    Wash TDB.

Same thing day in day out 24 hour back breaking care with no breaks....

The Uncaring Caring Profession

I sit here today in constant eye contact with my ailing hubby, wondering what is going to happen next. He is sat as still as possible as every movement causes pain. Over the last two weeks I have contacted the medical people involved in his care and met with a wall of silence. I told the GP that every 2-3 hours he was screaming out in pain and clutching his chest, the reaction, silence. Hubby has told them that a Klebsiella UTI was causing him grief with extra rigidity and spasms, the reaction a stupid letter implying that we had been telling everyone that our local hospital are refusing to treat Hubby, which is not the case. We are not stupid we do understand about resistance to antibiotics.

Take him to A&E I hear you cry.

I could do that but that would be rather cruel in Hubby's case as it on average takes 6 hours to get through the process, meanwhile he would be sat upright in his chair in pain, with breathing difficulties, he can not safely lie on the trolleys they have, his body being too spastic & contorted. They would then order an x-ray to check out the knife like stabbing pain in his back and spine, we would trot over to the department to be then told sorry we cant take an x-ray of your hubby as he can not sit still long enough or straight enough for us to do it.

I tried this morning to get him admitted straight onto a ward, where I could set up his special mattress and provide an environment for a doctor to at least check him out and maybe put our minds at rest. Sorry I don't feel comfortable dealing with your hubby's case, get in contact with your spinal injuries unit. Our spinal injuries unit is 80miles away in London. We rang this doctor yesterday left word with secretary that it was urgent, could he not have told us that yesterday. Thanks for nothing !

So here we sit looking at each other waiting for the inevitable, Autonomic Dysreflexia attack , heart attack, stroke etc etc...wondering whether the spinal injuries unit will phone us to come on in or whether they will slam a door in our faces as well.

Can things get any worse ?

Monday we had a long telephone conversation with our GP as Hubby is steadily deteriorating with what we think is the symptoms of the Klebsiella UTI, but the Microbiologist does not want to treat because there are limited antibiotics that can be used on this strain, last time it only seemed to reduce the levels and not totally kill off the infection. So the plan is wait until the operation for the Baclofen pump is set , give antibiotics in the lead up to, hoping that it does not become a full blown Kidney infection in the meanwhile. Hubby only has one Kidney.

What do I mean by deterioration.

Over the weekend, he reports that he is losing what poor function he has, in his arms and fingers. Has starting dropping his drink bottle. All his joints feel even stiffer than usual, which has lead to a very painful groin strain and unbearable pain in his lower back. He can no longer go through 6 hours in between catheters, on average 4 hourly at the moment. His Diaphragm feels very tight restricting speech and depth of breathing. Feels very weak, and bilious. Sense of touch is going getting numb fingers. Neuropathic pain (pins & needles, burning sensation) in feet even worse than usual. Very Painful Spasms in legs, left hip + arms increasing, increasing pain in arthritic left knee. Periodically his Autonomic System is also starting to show signs of internal distress as he is flushing up as if body is getting ready to have an attack, at those times getting sharp pain behind left eye, + feeling very hot. Twice during the weekend, when breathing + pain becoming an issue, I have felt totally out of my depth and have got extremely close to ringing 999.

I am caring for Hubby on my own due to our care agency walking out on us two weeks ago, trying to physically push through all the stiffness, spasms etc to carry on physiotherapy throughout the 24hour period just to get him through the day and night. I am also recovering from a summer cold that has left me with a hacking cough.

Hubby needs treatment for UTI now before it is too late quickly followed up with the fitting of the Baclofen pump.

I'm Not Superwoman.


Just a note to make a wares,
just in case someone cares.

Every time he cries with the pain, shouts and blames me, who is it in the firing line, is
it superwoman ? oh no its just me.

Every time suicide is in the air, his pain he can not bear, who is there, is it
superwoman ? oh no its just me.

Every time he angrily asks, why the medicos are not doing their tasks, who is there, is
it superwoman? oh no its just me.

Every time his feet fly off his chair, spasming in mid air, who is there, is it
superwoman ? oh no its just me.

Every third day who is there to collect the sh**, not a wife’s normal bit, is it
superwoman ? oh no its just me.

Every six hours to collect the p***, without a miss, is it superwoman? oh no its just me.

Every time he needs shifting who is doing the lifting, is it superwoman? oh no its just
me.

Every time he passes out, with blood pressure no doubt, is it superwoman? oh no its
just me.

Every time a new drug supply, who is it to apply, is it superwoman? oh no its just me.

Every time we ask for help and the medicos whelp, who is there, is it superwoman?
OH NO, WHY IS IT JUST ME?

Can things get any worse ?