January 27, 2012

What a week!!

it's been a bit of a marathon this week ... we started with another visit on Monday from the Ramp and Wetroom prevention officer. He came to do yet another assessment on Mark before he could put in any applications. Following the assessment we had another long diatribe on why we wouldn't get anything for at least 2 years. When he finally wound down we had our say. We explained to him very carefully that we have to move out of our current accommodation in 8 weeks. As it stands we can't get Mark into our new house, therefore we would need appropriate housing until such time as they put the ramps in. His answer .... we don't house people!! Especially people like you who have a house. But we can't get into that house without the ramps, doesn't that sound rather ridiculous to you??? Yes I understand what you're saying but we can't do anything else. OK. Well this is what we're going to do .... next week we will be contacting the newspapers and tell them our story and I'm sure Social Services really don't want themselves plastered all over the papers looking quite so stupid as to prevent a newly disabled person trying their best to be independent and get on with their lives and being prevented by something minimal like a set of ramps. His response .... well if that's how you feel that's what you'll have to do. He then watched Mark transfer from his chair to bed (what that's got to do with getting ramps we can't work out and he couldn't tell us) then got ready to leave. Just before he left the grey matter must have been working somewhere in there because he suddenly offered to see if he could get some temporary ramps for when we were ready to move in to put us on till our applications went through. Well. Maybe a little bad publicity isn't all that welcome after all!!

Next morning I get a phone call from said moron saying he could definitely get us some temporary ramps and would we be happy to accept them for the time being. Yes thankyou I say while thinking a little threat or two clearly can get something moving.

Wednesday ... we starve poor Mark from 7.30am ready for his supra pubic catheter op. No liquid after 10.30 apart from a few sips to take his handful of drugs due at mid day. We drive over to Pontefract Hospital (an hour and bit a way) and spend all afternoon waiting for assessments, doctors etc etc until time came to get on his operating trolley where I was supposed to get him undressed and into his flowery gown. Well the trolley was only 2 inches wider then Mark ... this should be interesting I'm going to have him on the floor getting him undressed for sure!! One of the nurses took pity on us and lent a hand, I think she was worried about the paperwork if I did throw him on the floor and perhaps broke another limb. He was away in surgery for about an hour and half then back to recovery room. Op went well, no problems, he's a bit dozy, now it's time to get him dressed again. Well on that skinny bed it was even harder than getting him undressed, man what a performance, just as well we've got a sense of humour or you'd just burst into tears. Time to go home and get some food into Mark. Had bought pizza cos we had no idea when we would be home and wanted something quick. Just as an aside, these days we hardly ever eat processed foods or takeaway. So pizza cooked and served, I had taken all the meat off and put it on Marks side and put anchovies on mine. We both enjoyed it.

Mark off to bed. 5am .... Maureen Maureen ... I leap out of bed half a sleep .. what's the matter ... I'm going to be sick .... oh great, I'm really bad dealing with people being sick. Ran for the bowl, towel and wipes, got him sitting up with bowl and had to stand outside the door or I would have been joining him. Well that was the end of our night, I was up then, swapping and washing our bowls while poor Mark was filling them. By 10ish I was getting worried cos he couldn't keep his drugs down and he really needs them. Rang the emergency doctor to ask for help. Mark slowing down with the throwing up by lunchtime, still no work from the doctor. Rang again, getting a little tense by now and asking why they had a doctor on duty for emergencies if I couldn't even get a phone call back. Doctor was out within the next half an hour. Poor Mark he was really in a bad way. He was blaming the pizza, I said it could have been the anesthetic, the doctor added that he could have caught something even that short time at the hospital, or it could have been the massive dose of antibiotics they gave him after the op. Whatever it was the most important thing was to stop him throwing up so his drugs would stay down. She also reviewed his pain meds and increased them yet again. He rattles now he's taking so much.

Thursday ... Mark in bed all day. Friday ... Mark in bed until 4pm. He got up, had a sandwich, lasted 3 hours in his chair and had to go back to bed due to massive pain. The pain he's suffering is getting worse and worse everyday, apart from the op, he's spending less and less time in his chair due to it ... it's not good at all. Over the two days in bed he's got more feeling back in his right hand and it's felt almost normal. As soon as he gets up in his chair it reverts back to tingling and pain. Something is definitely not right ... his doctor has written to the surgeon to try and speed up his next appointment and we're waiting to hear. Say a little prayer for Mark, he's really struggling now.

January 19, 2012

Can you hear me screaming????

We've had a very frustrating couple of days, yesterday we had yet another visit to Wheelchair Services - remember the saga, they wouldn't let Mark cancel it in November because it was too far along the way to being completed, we went in December and it was so bad when Mark sat in it he immediately went into violent spasms and had to get out nearly straight away. In addition to that problem the wheels they had ordered were the wrong size and Mark couldn't lift himself off his seat (important for circulation etc). So they sent us away and promised to get it sorted for the next visit. Anyway we went again yesterday, had to wait for them to put the new wheels on, alter the front casters and a few other things before he could actually get in it. As soon as he got in it he started to spasm and had violent pain in his back. He was so bad he couldn't lean back against the back rest and we had to hoist him out onto a plinth so he could lay down and wait for the pain to go. He hasn't been hoisted since about August of last year, so that was an indication that he was really bad. He laid there for nearly half an hour before he could get back in his own chair. Soooo now they're going to get another back and we have to wait another 6-8 weeks before we go again. You have to ask the question, wouldn't it be better value for the NHS to cancel the sodding thing and let him have the vouchers and sort his own out. That attitude is prevalent with just about everyone we have to deal with as you'll see by our next frustrating encounter......

Today we had a visit at the new house from the Social Services OT to discuss entrance ramps and the conversion of the current en-suite into a wetroom. We met him there (the house is not ours yet but the seller is lovely and we're always up there sorting stuff out) and although we couldn't get Mark in the house he wanted to come cos he could chat to the guy about the ramps while he was still in the car. Well you'll all have had the experience of speaking to someone new and just knowing that they're a complete NOB within the first few sentences. That impression only grew the longer he spoke. There's a door from the garage opposite the entrance to the utility, which is only a bit more than a meter wide, so it can be ramped so Mark can get straight from the garage into the house. Pretty simple you would think, oh no. According to the NOB that was totally unfeasible and he wouldn't even discuss it any further. So we discuss the ramp into the front door. We want it to come out of the front door and turn right and run alongside the front of the house towards the garage, simple we thought. Oh no. If we're involved in putting in a ramp it has to come out of the front door and continue straight out into the middle of the front garden for about 12/14 feet. Right in the way of anyone else driving in and wanting to park. So how much leeway in terms of design do we have here, we ask? None, if we're funding it you do it our way or not at all!! Well that's told us. So what's the process we ask. Well, first I have to come and assess Mark transferring, then I write a report to the Panel. IF the Panel agree, then it goes into the funding process, which can take up to 2 years! So with that we move inside to look at the en-suite and explain we want to turn that into a wetroom. In fairness it's not a huge job, only the shower end needs changing into a level access area with a wetroom drain. Well if we thought getting the ramps wasn't easy this proved near impossible because they don't think the room is wide enough and doesn't have enough turning circle. The fact that Mark doesn't need a turning circle in there just didn't register even when I'd described a number of times how Mark would use the room. Do you get the picture that I'm on a looser here. Can you see me starting to get hot under the collar. To give you another titbit of what brain power I'm dealing with here, I explained we would be placing our bed against the wall 90 degrees from where the current owners bed was so Mark had good access to the bed and to the wetroom. From the look on his face I could tell he didn't understand what I was saying - well it was complicated for the poor guy!! I walked him through it veeeerrrrryyyy slowly two more times before he got it. Man this is NOT going well.

So we get to the discussion on how can we move ANYTHING forward. There is a glimmer of hope. After he's done the assessment on Mark, we can get two quotes to have the ramp done, in accordance to their specs, then he can put the report in the Panel and ask for a Direct Payment for the ramp from the front door into the garden. OK, what about the wetroom. Oh no. We won't fund the wetroom unless you agree to do it just the way we specify. And you would never get a Direct Payment for that anyway. It will have to go through the funding process and take the two or more years to be funded. Well that's told us. By now I feel I need to get this guy out of the house before I get violent, because I so easily could!!!!

Will we ever get to the stage where we don't have to deal with these jobs worths??

January 10, 2012

Another visit to Pinderfields

Mark rang to push for an earlier apptn to get the results from the MRI and wonder of wonders we got one for today. His consultant is on holiday so we saw Dr Ram who was his doctor when he was in there and a nice man. The results from the MRI show that the syrinx hasn't got any bigger so that's not causing the problems. He sent us for an X-ray so we went upstairs and had that straight away, had lunch then went down and saw Dr Ram again. The X-ray shows no problems with vertebrae above the fixture and doesn't actually show any problems with the fixture either. Having said that it the X-ray can't show anything when he's actually moving around, which is what causes the problems. Dr Ram can't offer any solution to the problem, other than he agrees it's a positional / postural problem and while we were up at X-Ray he wrote the referral to the Nuero Surgeon in Leeds and another to our local Doctor so he can keep chasing for the apptn.

Dr Ram did tell us today, that it's not uncommon to have a fixture like Mark's taken out if it's causing problems, that's something else no one has mentioned before. So we'll have to wait now and see what the guy in Leeds says. At least we have moved another step forward.

We also got our mortgage issued yesterday, so now it's up to the Solicitors to get the rest sorted. We're also stepping into another huge frustration area, and that's dealing with Social Services to get ramps and wetroom funded. Although we have a meeting organised with the assessor next week, he's already told us it's unlikely we'll get anything within the current system. It can take up to 2 years to get funding through!! So watch this space............

January 06, 2012

Another step backwards

Dec 30th (I know I've been slack) Mark had his 'urgent' MRI. He got his monies worth this time, they did him twice, once without the dye in his system and once with it. You would think in this day and age of digital information, the results would be available pretty quickly, but no, still 10 days before they send it through to the Consultant, but what the heck, the Consultant is on holiday anyway so we have to wait for him to come back at the end of Jan!! So much for urgent. So we don't have any feedback on that yet - frustration levels are very high.

Yesterday we had to go back to Pinderfields again to see the Urologist to discuss why his bladder is not working properly and causing all the dysreflexia attacks - is it an independent problem or is it happening because there's a problem in his back. The Urologist is one of the good guys, Mark has respect for him. Unfortunately, he's not sure if it's because of other problems or just something that happens around this time following the accident. He told Mark that for 18 months his autonomic system will be in flux, learning how to deal with the change. That was a surprise, no one has told him that before. Anyway he discussed a number of options Mark has for the forseeable future to solve his bladder problem, there are drug options but the Urologist has no faith in them, there's a small op where the bladder sphincter is cut so the bladder is free draining, there's another op where part of the bowel is removed and added to increase the size of the bladder then it won't get to the stage where it wants to spasm to empty so won't cause dysreflexia. The most common solution is a SupraPubic catheter. It's a small op usually performed under a general anesthetic. He will only be in for the day.

An incision is made just above the pubic bone and a small hole is poked in the bladder and a catheter is inserted. It is held inside the bladder by a small balloon inflated with sterile water. The bladder then drains into an external leg bag as normal. The biggest benefit of this method is that it's totally reversible. So when the problems in his back are sorted out he may be able to train his bladder to work properly again. At that point the catheter is just removed the the hole heals over. Mark had his pre op assessment while we were there yesterday and he should have it done within the next 6 weeks. It will help in that we won't be worried about any more dysreflexia attacks but it's a backward step as far as Mark is concerned because it's a foreign body inside him and he wanted to avoid that at all costs.

On a positive note, house is progressing but it is slow!!! We should get our formal offer of a mortgage by the end of next week then it's over to the solicitors. Luckily we've got a good one - haven't we Mike!!!