Recovery since GOM came home has been good. He has reached a point where most mornings he can pull himself up to standing with out any assistance. We have had a review of the home care package and, because he is doing so well, we want to try to incorporate more standing, so we're going to try for showers every day.

WE got into town together for the first time today. I had to push him in his chair, his back muscles are not strong enough to use the trike. The one time we tried, a few weeks ago he became bent over sideways on the return journey, so we need to give it a bit longer before we try again. We've arranged for him to restart his gym sessions on Tuesday so hopefully he can cope.

Met Physios on Monday and they took the rotunda.

They'd already done some work with GOM before I got there and he hadn't been too bad. Noticed that they've marked the 'white board' with a discharge date of 7th August.

Towards evening visiting gom asked to used the commode and instead of the hoist we managed with the rotunda although the hoist still had to be used to get him into bed as it was too high with both mattresses to use the rotunda.

Tuesday morning I went into town and did some shopping and when I got back had a call from the hospital to say that he would be coming home. The transport would be able to bring the rotunda, so I wouldn't have to go up there. He arrived back about 2pm

There was a bit of bleeding after I changed the leg bag over but it cleared. Then when he went to bed I saw that the wound had been weeping quite a bit (probably chaffing on his undies), so got some disinfected water and bathed it with cotton buds. It seemed to be ok after that until Wednesday morning.

Transfers have been going very well, but his legs are super sensitive and react to the slightest touch, so it's difficult for him to stand for very long periods - even with support.

This morning the wound was very 'mucky' again with a bit of blood in the discharge. Bought some Melolin sterile dressings from the local pharmacy, but the the district nurse came later and she brought dressings and things with her so we should be ok for a while.

The home care is back with us for morning sessions, but we have deferred showers until monday to see if his legs settle down a bit.

He could also be getting a bit constipated so have given him something for that otherwise everything seems to be going very well.

GOM went in for his op on Thursday

Patient transport let us down again and didn't turn up until 12pm so we were an hour late getting there. The admissions letter requests 11.30 am.

Once we got there all seemed to be going well, but they didn't have the special bed ready for him and they initially thought that it was on the ward where he would be going after the op, but when they tried to get it moved to the admissions lounge it didn't arrive in time for his op.

The registrar had said he would be first on the list so he should have been ready for 2pm but he was still dressed and in his wheelchair when they called for him from theatre. It then became very rushed to get him into a normal bed, undressed and down to theatre, but they said he would be tranferred to the other bed when he got to the ward. I walked his chair and bag down to the ward and then came home.

Phoned the ward at 4pm and he was back and ok, so I went back for evening visiting at 6pm after which I spent time trying to chase up what had happened to the bed as they hadn't moved him to it and he was looking very uncomfortable as he kept slipping down.

Got call at 9.30 am to say he was ok to come home and they had booked transport for 4pm, but they hadn't arranged for any physios to see him and I said that they needed to, but they disagreed. Anyway when I got there he was still in bed even although I had been told he would be up and ok soon.

I then had to search out the sister and press to get a physio to see him as we needed to know that he could stand to tranfer when we got him hom. In the event they didn't have the right equipment so the trial attempt to get him out of bed was a disaster, and they agreed that he would have to stay in for the weekend. They also hadn't done anything to getting the profiling bed (because they obviously thought he wouldn't need it if he was going home), but eventually by saturday morning it arrived.

Hope everything is going well when I get up there at 2, but boy is it HOT

All has been going well wtih the new agency.

The lady comes in on the dot of 8.15 or some days even 8.10, so I've given up on trying to wash and shower myself before she comes.

GOM managed to stand well on his three shower days which as predicted takes 40-45 mins. While gom is shaving etc she does the bed and we have a chat or if there are any other tasks she just 'dips in'.

Have had to chase the county council as they've issued a bill for June for gom's care which of course we've already paid the agency, so don't know why they've issued it.

But the hospital's Care manager sounds pretty useless, so it wouldn't surprise me if he didn't tell the benefits department that he'd set up an agency for gom's home care.

When I contacted the social care manager about the additional equipment, I discovered that he'd closed the file down so that gom wasn't listed as an 'open' client to the social care manager. We've been with her for three years and she always keeps the file open because gom's care is ongoing and changeable. But talking to others it sounds as though the hospital staff are 'laws unto themselves'. No one is surprised by their actions.

A girl from the rehab unit comes in to work with gom on some exercises.

Friday 13th we have to go to the hospital for the pre op assessment. Transport has been booked to get us their, which will be interesting. Ideally I'd like to follow with the the car, but I've been booked in as an escort.

Didn't realise that so much time had passed since the last update, so much has happened since then and not all good so it's not easy to know where to start.

Summarising might be better and using the old hindsight as an aid.

Once gom finished his antibiotics, more problems came to light and we discovered that he'd got one of the 'hospital acquired' super bugs, C-Dif. Which explained the hospital's changed of heart about sending him to the rehab ward, as they must have known about it before he came home but we'd have a hard job proving negligence, and I don't really have the energy for it at the moment. Also the doctor's expresssion when I started to talk about treating infections at home also explains a lot, although I wasn't in a position to understand at the time, but he must have known or suspected that he may have been sending gom home with an infection of some type. The reports in the paper stated that the wards were closed from 4th May, but we know they were closing the unit to new admissions on 2 May, the Day that they changed their mind about sending him to the rehab unit.

We saw the neurologist eventually and it was agreed to get the op for the suprapubic catheter as soon as possible. Contacted the Urologist and he booked the admission for 2nd August.

The Home Care team continued to come in three times a day until the end of May, when they decided to hand over to an agency. This was where more troubles began.

We gave the Care manager at the hospital the name of a preferred agency that had been recommended to us, but he didn't come back to us and say they didn't have anyone available, instead he contacted another agency with our our knowledge and THEIR manager contacted us.

All seemed well initially, their rates seem reasonable and they were pro rata for 30, 45 and 60 minutes. They introduced a male care worker to come in the mornings (between 8.30-9am) for washing and showering and a female for the evenings (between 9-9.30pm) to get help get gom into bed. She had her own transport and other clients before and after us, but the male only had us and he was dependent on public transport.

We were only expecting to have the male for 30-45 mins a day, but from the beginning he kept insisting that he stayed for the full hour. I had an argument with him that we hadn't agreed to the longer time but he was insistant, so I contacted the manager and she agreed that he should only book the time that we needed him and I should sign the time sheets accordingly, however the second week he continued to book the full hour instead of a maximum of 45 mins so we decided to cut down the number of days to just 5. As he continually hung around trying to find additional tasks to justify the time, I made sure that there weren't any, - I was able to get gom up, and in the bathroom and I made the bed all before the guy arrived (usually after 9am) but he still sat around for up to 15 mins after he'd finished just writing up the notes.

By doing as much as I could before he arrived I was able to cut the maximum time down to 35-40 mins but the guy still insisted on claiming for the full hour on the days that gom had a shower, although thankfully, on the other days (when he was only here for max of 20 mins) he only claimed for the minimum 30 mins. The girl in the evening was great, but then her car broke down and she became dependent on Public transport, which given the lateness of the hour was not acceptable.

I gave the manager 2 weeks notice that we would start phasing out the care on 2nd July, with the guy only coming in three days a week for showers. But then the attendance of the evening care worker got worse so we gave notice to cancel it all together. Then the morning guy didn't turn up either so we gave notice to cancel that as well.

I contacted the social care team because if I was going to do it all myself I would need more equipment and was given the name of a more locally based agency. I contecde the manager and arranged for them to do their risk assessment the next day, but then the other guy turned up again so when he'd finished we told him he wouldn't be needed again which once again he argued about.

The new agency were engaged and the new care worker was booked to start between 8.15-8.30, which was good for the first day as we had a hospital appointment and needed to be ready early.

I got gom up just before 8am and he was in the bathroom when the new lady arrived at 8.20-8.25 (she'd got a bit lost). We tried for a shower, but gom couldn't stand, so he had a strip wash instead. We were nearly finished at around 8.40 when the guy from the other agency turned up AGAIN. I didn't answer the door to him as we were busy with gom but he kept hanging around. Eventually I answered the door and told him he wasn't needed, but he insisted on coming in to sign the books which I thought he'd taken with him the previous day. He was adament he hadn't but it wasn't here so he must have done so and I suspect he had really because he knew that I'd altered the times on some of the sheets. He eventually went and we haven't seen him since. The old agency then contacted us to ask for two weeks notice in writing but gom wrote to them pointing out that their contract only required 24 hrs notice and we had already given them that.

The woman from the new agency regularly turns up at 8.15 and gom is washed and dressed by 8.40, even when like this morning I had trouble getting him out of bed and she had to wait for him to do his teeth etc before she went in to help him with his back and other private parts. In this waiting time she helped me make the bed, we chatted and she then helped me fold some washing. She has five clients in our area and doesn't need to go to her next one until 9 so we have enough spare time to cover for any problems without worrying that we are holding her up.

Their rates are slightly higher than the other agency but we are getting better value for money, so we don't mind. It also means that I don't have to rush around and get myself showered and dressed before gom gets up.

Things all changed after Monday and they decided that rehab could't do any more for my GOM and he would have to come home with an enhanced care package.

What they initially offered us wasn't acceptable - only home care, physio and catheter maintenance, but after a bit of a battle they also agreed to write up a standby supply of antibiotics. We had evidence to back up our argument as when the infection re occurred when he was at the rehab hospital, there was less of an impact on his system because they were able to treat it immediately, but when he's at home we would have to wait to see or speak to a doctor, and this delay could result with him ending back up in hospital, which no body wanted.

He was discharged on Thursday afternoon and the home care assessment restarted on Thursday night. It's the same team as before, so they know how good he can be, and they can see the difference between then and now, so hopefully they will keep the assessment going until he's reached something near the mobility that he had before he was admitted for the second time.

Friday he was able to transfer and move quite well, but Saturday his upper body strength was quite poor so it was quite evident that he'd suffered a bit from his activities of the previous day.

Have set up an old portable tv in the bedroom, as they usually come in to get him ready for bed between 7pm and 8pm, but he doesn't like to lay down that early.

We have the district nurse lined up to come in to see David on Tuesday. They have ordered a spare supply of catheters and leg bags, although they were able to drop off a few spares of the leg bags (albeit smaller) for us on Friday.

Sister in Law came down for a visit on Friday and sat with him while I went into town to get some provisions. She has booked an appointment for us to see his neurologist privately on 14th May. On NHS we couldn't see him before 27th June. We want to see if we can begin a course of treatment to stabilise the ms, in an effort to reduce the impact that these infections have on his system. We will then try to bring forward the operation to fit the other catheter, as this will also reduce the risk of infection. Therefore attacking the problems form both sides, instead of just treating the symptoms of any infection as they occur.

Quite an eventful Day today.

GOM feeling down for obvious reasons, he had declined breakfast because there was no one to feed him, so to start, I had to go on a hunt for a bowl of muesli.

Then I had an argument with a nurse because the doctor had decided to take out catheter (no problem with that) only the nurse couldn't tell me if was to be replaced. I had to insist that if it wasn't there would be other consequences, so she got the agreement that a new one would be put in.

Then he had to go for an Ultrasound scan of his kidneys, chest and bladder. Then finally he saw the 'in house' physio who agreed that for 'continuity of care', if it was confirmed that he needed more rehab, they would try to get him back to the hospital he was discharged from last Tuesday.

Oh and because initially his bed was a third bed squashed in between 2 beds, as soon as another bay was vacated I asked for him to be moved because, with his wheelchair, he needed more space.

GOM finally came home on 24th April, athough he very nearly didn't make it when he couldn't transfer to the car. Had to go and get the ot's to help him get in. Transfer at home was easier but not without its problems.

Care assessment team started coming in from 25th to give him a shower. On the first day he had to stay in bed until they arrived (quite early - 8.30), but since then I've been able to get him up.

They've decided that he needs two care assistants for the moment, but this also means that he will be an early appointment. We've also told them that we would like the early appointments to continue as he needs to have his physio sessions around 10-11 am so this seems to work on all fronts as they can have him ready in time.

Wednesday and Thursday he was ok with his morning transfers, but this morning he felt a bit sick so it was a bit of a race to get him up before he was sick but we made it and he was up before the care assistants arrived just after 8.30. Yesterday he was up and eating his breakfast when the girls arrived around 9.00.

He's managed most of his afternoon tranfers so far, but the evening one last night was a bit of problem and he had to spend the evening in his wheelchair, which also made the transfer to bed a bit more difficult as the wheelchair seat is lower, but we're managing after a fashion.

There was a bit of a cock up with the referral to the district nurse and it went to the one who covers a different part of the area, but I had the contact number for the correct one from previous visits so was able to contact them to arrange for a new supply of the night drainage bags. Need to contact our local pharmacy later to see if they're in.

Got to hospital on Tuesday to find that gom has started being sick. Couldn't keep any food down and for a while no water either.

Thought initally it could be because they'd tried taking him off the anti biotics. They re-instated them on Wednesday night and I'd hoped to see an improvement when I went the Thursday.......

Only I didn't make it - early hours of Thursday morning I started being sick, then the diarhea started. Could this have been what gom had ?

Later in the morning I managed to take some dried bread, and then about lunch time I tried a banana but that promptly came back :(.

Later managed some baked apple and then for supper I had some mashed potato, both of which stayed down. Then this morning I managed some cereal and coffee so things seem to be back to normal but still got a bit of a 'fuzzy head' so haven't been to the hospital today either.

Gom's sister was going anyway so just stayed at home to get better for tomorrow and thereafter.

Boy what a couple of weeks we've just had.

That last Monday (12th) night was a really bad night and on Tuesday (13th) had to call out the gp who subsequently had GOM admitted to the medical assessment unit at our local hospital.

GOM had become quite dehydrated in the night and gradually became unable to take any water (fluids) orally.

Arrived MAU by about 2pm and the after he'd had all the examinations they finally got him onto iv saline and eventually a catheter. Moved him to a side room and I left about 11pm to come home

Wednesday got up there around 10am and there started a nightmare day - some 'prat' of a doctor decided to stop the iv saline because he thought gom was taking enough fluids orally but even an amatuer could see his urine was the wrong colour. Very worried when I left him about 8pm and had another bad night.

Got up there a bit later Thursday (10.30am) and saw that he'd been put back on iv saline some one had obviously seen some sense in the night. Different doctor (more senior?) and the change in his condition was noticable throught the day. hey even decided to get him out into the chair whcih wasn't a great success as he kept slipping out but.... He also still needed to be fed and helped with drinks but he was so obviously getting better. Again left about 8pm but had better night

Friday he was ready for them to move him to a rehab hospital where he's been ever since. Still on catheter, but he's so much better. He's regained most of the use of his hands, but he's still fairly weak from the waist down. He has some movement in his left foot but nothing in the right and needs more that one person to help him transfer. He washes himslef now and can use a razor safely but they have to wash his back and 'nether' regions.

He's had an xray of his neck and scan of his head just to make sure that it is just the ms and there aren't any other underlying causes. Just got to wait for the physical rehab to start - usual story of understaffing.

Been trying to keep my visiting to a minimum but still going every day, need to cut down as they are taking care of him unlike at the mau where I had to do all the non medical care.

Need to give my back a rest from those stupid plastic stackable chairs