There's Patches & There's Patches

Weekend

pretty uneventful, starting to get into a routine, up at 6am do his catheter, lie down for another 20mins, up roll up bedding, put mattress into vacuum pack bag roll out the air. Get a wash or shower, ready for another day. Saturday got out to ASDA in the afternoon, bought a really cheap DVD player as the ones on the provided TV's are not working and some food for myself for the week.

Monday 2nd July

Lots to do on this day. Try to co-ordinate everything with the busy nursing team, we manage it, sort of, but a bit manic. 2 lots of IV antibiotics, bowel emptying, vacuum dressing change, sounds easy when you say it quick. Every item takes time and can not be done at the same time. The Etrapenem Antibiotic takes 1/2 hour, the [x-]mycin one takes nearly an hour, bowels 2 hours, vac dressing 1/2 hour, then there's lunch and dinner, as you can see the whole afternoon is shot. Well we get Hubby settled after all that poor dude is knackered. Then just before 6pm the drug run, brought us a bit of a laugh. They tried to prescribe Nicotine Patches instead of his pain patches. Very funny since Hubby has never smoked and was a keen sportsman before his illness. We could have been upset by this but you have to keep a sense of humour about these things.

Yesterday.

Got up as usual. Get Hubby his breakfast, look out of the window and see a beautiful little beasty.

A little dear, thought it was a goat at first but no it really is an urban dear. Yesterday was quite busy, doctors rounds and met up with Hubby's OT again. Hoping to mobilise him in a wheelchair with pump attached. Any way we will see. Have a bit of do with cleaner he has a thick heavy cold, coughing and sneezing and then wondered why I didn't want him anywhere near Hubby.

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 .....

#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. 

5 days on quite obvious no one gives a shit

The real story of caring today and the real pain of being on a NHS waiting list.

It's Saturday, spent all week waiting for the calls from the medical people who have the power to change our situation. But no we are still here in the same bad position.

I have spent most of the day after getting hubby up at 8am this morning trying to rearrange his feet, trying to make him a little more comfortable. Sitting watching him, as his left hip spasms so bad that he hangs onto his wheelchair with his right arm as if riding a bucking bronco ride, trying to hang on until it subsides or I lift him again to try and make him comfortable. But still no one is listening I watch his face the pain etched across it, and jump out of my skin as he shouts in pain and his startle at the sudden start of the spasms again.

I dare not complain of my many aches and pains, as his are 100 fold mine. Just praying my body holds out long enough to see him through this. This week I had to give up another chance of getting back to work because we have no carers.

Monday I will try and get him to the local hospital for an ultrasound scan of his bladder, maybe that might kick start some much needed help. I hear him shouting in pain again got to go and help him. See you all laters ....