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. 

Hubby , On Another Long Recovery Road.

We received a phone call in the early evening on Monday 18th from RNOH that a bed had been secured for Hubby, could we make our way on Tuesday. Well actually no as Hubby needs an ambulance + paramedic, so we made our way on Wednesday instead, Hubby in the ambulance me following in our car with a months worth of clothes and supplies. Ambulance crew were Hubby reports really nice guys.


I of course had problems finding some where to park on arrival so Hubby was already in his room by the time I arrived. Apparently I missed one of the usually very good helper staff being very rough with him, need to keep her away from him for the duration. The Ambulance driver even noticed and told him quietly as he left to not take that kind of crap. Spinal patients can end up being roughly handled when positioning them in bed, by the time you have log rolled them several times, used a sliding sheet etc it can be quite wearing and painful. I think it happened this time because the helper had not read my briefing sheet before coming into contact with her patient, I have asked the staff to be very careful when touching Hubby because of his elevated pain levels. No sudden grabbing of limbs without warning etc. I am trying to avoid nasty verbal exchanges, as Hubby will tell them in no uncertain terms if they do hurt him. Treat him nice and he will be the most affable guy ever met, fall out with him, well lets not go there.


Hubby was the last patient on the surgical list, so it was very late when he finally got wheeled into theatre. During surgery they cut away the necrotic tissue, cleaned up the wound, took bone and tissue samples. They also attached a vacuum pump to the wound to drain off the blood and crap etc After such a long day Hubby was a bit grumpy afterwards and apparently having words with the theatre staff afterwards, as he was so cold and they would not listen to him about the Flowtrons they wanted to use on him, it had been agreed pre op that he could forego their use due to his spasms in his legs and especially his left knee. If you want to wind him up treat him like a stereotyped geriatric that doesn't know his own mind.


In the days since Hubby has met his plastic surgeon who will come into play later in his treatment plan. The spinal surgeon made an appearance to say things had gone okay.


We also met one of the dieticians, who basically said hubby needs to eat well to keep his protein , zinc, vitamin etc levels in his blood at good levels  to help with the healing process. This sounds good but have you eaten hospital food lately. They provide meals like the home delivered ones Ronnie Corbett, comedian advertises. Everything is microwaved into an inch of its life. So I will try and get out and fetch some extra food, which I need as well as even though I am here full time with hubby they do not feed people's carers our particular hostess is very huffy about me even pinching a mouthful Hubby's left overs.  They have choice on the menu but no where near enough for long term stayers. I would find the menu easier to cope with as I like food with some spice in it, but hubby hates sauces except gravy , only eats pasta and rice occasionally, so that further limits his choices. The menu has also missed a few staples of British diet , spaghetti bolognese being one.


Getting food on the hospital site is a bit problematic, the main EAT restaurant is not open 24 /7 and was closed when advertised as open Wednesday evening when I went to check it out. Last time I went there the food wasn't up to much.Can recommend the bacon sandwiches cooked by the volunteers in the WRVS. Basil's Cafe,  in the Aspire complex has very good atmosphere and food, although a bit pricey.


The ward is very noisy most of the time so Hubby is having problems getting enough sleep / rest. The front ward door continually bangs. He also has a pump running draining fluid from his wound and the special alternating air mattress which is also very noisy. So we have swapped one lot of intrusive door banging at home for another lot. I am  sleeping on the floor on a couple of memory foam mattress toppers which get taken up at every morning at 6am and vacuum packed in a bag to save space. Trying to persuade one of the local hotels to give me a special rate so that I can leave Hubby on nights at least, sleep in a real bed and get a shower. At the moment the sink washes are becoming more than a little tedious. Mind you solidarity with my poor Hubby as I guess lord only knows when he will get a shower again, I have been bed bathing him and have bought him some of those waterless shampoo shower caps so that his hair does not become so greasy you could fry chips with it. 




This week should be pretty calm, although on Friday he will be put under anaesthetic again to fit a long line in for his antibiotics. Better than hand based cannula which  tend to get in the way of his already under functioning hands. 


We are lucky in the fact that this ward is supplied with TV/DVD players that were supplied by the Buttercup walk charity, but over time the remote controls have been taken by the little people. I am surprised this has not been addressed as it is a form of disability discrimination leaving this group of patients at the mercy of the over worked under resourced staff to change channels etc.     


onwards and upwards...

Progress & Recognition

We left the house at 11am in an ambulance with our just in case paramedic on board. Hubby laid on his back positioned on a piece Roho cushioning to try and save his pressure sore from getting even worse. There he laid for the 1 1/2 journey feeling the pain cursing through his body with every bump and lump in the roads. His swollen feet on fire with the neuropathic pain.

We phoned the Outpatient Assessment Centre Bolsover Street, Central London, when we were about 15 minutes away and to their credit, porters were waiting for us to take us up to the first floor appointment. No sooner had we arrived and they decided to send Hubby for some more x-rays, which we found rather odd since in the preceding weeks, both MRI / CT scans had already been taken. Oh, a different angle is required with Hubby sitting up to show how his spine looks under the pressure of gravity. Okay we said, not sure how we will accomplish that for you as Hubby can not sit up unaided. Anyway we managed it, sort of, with me and the radiology nurse helping to prop him up. I love how these consultants order these tests and do not have a clue how difficult it is for the patient to actually do it.

We eventually got to see the consultant after a further wait. By this time the wound blood was starting to seep through the dressing, so I guess he got to see it at its worse. He did not seem to deliberate for long before announcing to his colleagues, that a bed needs to be found urgently for his patient. They will try and get him in early next week, or as soon as a bed becomes available. He told Hubby that he hoped he realised that it will be a prolonged hospital stay, we said what about a month , he said no maybe longer. He mentioned something about Hubby's Baclofen pump being a possible extra source of infection, that was something new to us which we will have to research what he meant.

We thought we were finished so asked the ambulance crew up, but no apparently they wanted to do  pre-admission procedures to apparently save time next week during his admission. Hubby by this time is getting very grumpy, having not being able eat, being in pain etc etc. The poor Doctor taking the bloods & details got the brunt of Hubby's displeasure, which I hope he does not take personally.

We eventually set off for home at about  5.30pm. On the way back the driver got a bit lost and we ended up on the M1 rather than A1 so Hubby had to endure an even more bumpy cross country trip. At one point I thought we were in medical trouble with Hubby as he went as pale as a white sheet, his face contorted in pain. How he managed to keep it together I do not know, as even myself able bodied as I am was in pain, feeling sick etc. We arrived back home just after 7. 8 hours since leaving home in the morning.

Can someone tell me how this is conducive to good patient care, well being. It is about time specialist units like this made use of information technology , doing consultations in conjunction with local doctors via video phones.

So now we wait for the available bed at RNOH Stanmore and another torturous journey to hospital. At least we have a few days to get everything ready.

Overall a successful but painful visit .....

The Inequalities of Life in the UK, Medical Apartheid.

Hubby is getting his 7cm x 7cm thoracic, spinal deep, grade 4 wound, dressed every day by the local nurses, who keep telling us he should be in hospital, because of the amount of bleeding, swelling . Do the Doctors not have a duty to listen to their concerns ?

It was with some irony, that I watched the news of a certain high profile elderly gentleman being hospitalised with an UTI. Most of us plebs would be thrown a bottle of antibiotics and be told to get on with it. Having said that  I am glad someone in this inequitable country is getting the medical treatment needed to stay healthy, and wish him long life and health, as I would any fellow human being.

So its been 4 months 4 days since Hubby sustained an injury to his back whilst on holiday. The wound is not progressing in a timely manner from the initial, Inflammation Stage è Proliferative èMaturation . Most documents I have read say that stages 1&2 should last no more than 2 months, where as the last stage can take months - years. While he still has the necrotic tissue in place his wound stands no chance of healing over and is a ticking time bomb for possible infection, and further destabilisation of his spine. Only reason he has not got systemically sick already is the broad spectrum antibiotics he is taking. 


There will be no surprise to many readers of this piece, that there is Medical Apartheid in the UK. If you have money you get treated straight away, if not they leave you as long as they think they can get away with , gambling  that you don't get too sick to treat, kind of hoping that you die so problem goes away, or fire fight as you have to go into hospital under emergency rather than urgent conditions. Do not let anyone fool you , your hospital admission unless you are in A&E and at deaths door today, is based firstly on how many spare beds, surgeon schedules, not on whether you have an urgent clinical need to be medically sorted. 


As I said its a gamble taken by the admissions people who do not always know how ill you are, what effects the delay will have on your long term life expectancy or quality of life. One might cynically  ask , and do they care? probably not. There will be no personal accountability for the decisions that they make. 


Make a complaint , be prepared to receive a letter that bears no relation to the reality that you went through, no proper investigation, no root cause analysis, just trite politicking. Remember the NHS is not a learning organisation, in the management organisation meaning of the word , it repeats and repeats the same mistakes over and over again. One life lost or ruined is one too many in my book.


So all I can ask is please do not play Russian Roulette with my Hubby's life, I like having him around. One family funeral is enough this year for anyone. 

What could I do if we won the Euro-millions

I got to thinking what good could I do if we were the lucky winners of the enormous Euro-millions jackpot.

There is a empty plot of land opposite us, I would love to have 5 state of the art accessible bungalows built on it. I would build a little community, with a ramp accessible warm therapy pool , that the local community could use as well. Staff up the place with physiotherapists, senior experienced nurses to run the place and well paid / trained carers to help the people living there.

The spacious 2 bedroom, bungalows would be open plan so that wheelchairs have easy access everywhere. for example , ceiling hoist tracks built in. Electronic sliding front doors. Use the latest technology in Eco friendly heating and recycling of water. Make use of technology to aid those living there with their independence. The site would also have office / shower  facilities for the support staff. The gardens with shade, would be accessible, with sensory elements, raised beds etc.

if we got the business template right we would then open other sites around the country in areas where the council is failing to meet the needs of the local disabled community. I would also use the project to indulge my passions in developing business talent as I would encourage the physiotherapists to develop themselves into business units using the provided facilities to provide services to the wider community, in the spare under utilised slots for the bungalow community residents.

I would also like to fund research into new electric wheelchair battery technology, to make them last longer, maybe by some sort of recycling energy technology, plus make the batteries physically lighter and smaller. Why can't the disabled have chairs more akin to Professor Xavier's wheelchair from the X-Men.

On a personal front we would of course get Hubby the best treatment available , hire well paid / trained personal staff to help him. Buy the equipment that would make his life a lot easier, place to live, car, specially adapted electric wheelchair etc.

But at the moment no amount of money in the world would probably  be able to make him be able to walk again. 


Final thought for today : Money can do a lot of things but can not make the impossible, possible.

#NHS Thriller-Farce Update

Right, deep breath, so many things going on at the moment, or should I say not progressing as they should be, involving Hubby’s care,

MRI Scan Results

Results letter says “oedema-like marrow signal in tip of T10/11/12 spinous process with possible destruction. Likely Osteomyelitis”  does not sound good does it !

Baclofen Pump Refil.

Hubby travelled all the way to Addenbrooke's on Wednesday, despite having grade 4 pressure sore. We are lobbying for this in future to be done at consultants Peterborough clinic. We will fight them on the beaches, we will fight them ...

CT Scan.

After two abortive attempts, no ambulance supplied, got Hubby’s scan done on Thursday. Scanning unit at Peterborough were very supportive, used some initiative , did a scan of his whole thoracic spine plus upper lumbar to make sure surgeon has full picture including the new hump that has appeared on Hubby’s back. They also did a dye contrast scan . So hopefully RNOH surgeon has all the info he needs to make a speedy assessment. We now await the results. He will send for Hubby for an out patient appointment first, so another long ambulance trip for a 10 minute consultation, not happy about that. Why don’t they do stuff like that using video calls. I know they like to see / feel the patient but in this case there is more danger to Hubby travelling all that way than the value the consultant will get out of the consultation. Unless they will admit straight away.

Pain

Hubby in varying levels of pain, keeps complaining of different kinds of pain in different locations. Eg keeps getting sharp pains in his head, occasional stomach pain. His arms and shoulders are a worry, he is really concerned that he going to lose the little function he has. Neuropathic pain in his feet is bad at the moment as well. Been waking me up during the night because he keeps getting painful spasms in his right leg.

Carers

No word what so ever from the dude at the PCT in charge of getting us care provision.  I have been told he is breaking the law not getting it sorted as Hubby comes under Continuing Health Care . NHS is therefore liable to provide his carers. Meanwhile I am coming under pressure to put Hubby in a nursing home because of my own health problems with my back. I find this an incredibly stupid suggestion on lots of levels, nursing homes are not keen on taking patient on that should be in hospital, Hubby needs a specialist unit for the severely physically disabled, but I know they will try and bundle him into a dementia unit which is totally unsuitable as he is as fully mentally aware. We are going to use some of our savings to get me checked out, MOT, when I get him in hospital, will rule out any serious causes of the pain in my back and hips. I am not happy living on pain killers long term not knowing what is up. Probably a trapped nerve though.

Next Moves

Firstly get through this long weekend. After which continue to lobby GP’s &  surgeon to get Hubby into the spinal unit asap. Battle to get hubby his carers  afterwards, 1 battle at a time.