Came out here yesterday morning. I have to say my heart sank when we arrived. The place looks an old-fashioned IHC institution. There are 2 15 bed "wards", each with three cell-like rooms (for the patients lucky enough to have their own room) and 3 4-bed dorm-type rooms. The furniture is battered, rusty wheels on the tray tables that don't work, torn curtains, badly needing painting, furniture in the "dining room" looked as though it had been discarded by a Salvation Army op store and the patients' lounge was the same, but unavailable to the patients anyway because the staff were having meetings in it. Most equipment looks as though it's an ADHB 2nd hand reject. Ross has to use a communal loo and there wasn't any disinfectant or loo cleaner to clean the seat or clean the loo after use! Not only that but when I took Ross into the "dining room" for tea I brightly greeted all the other patients and introduced Ross and not one of them even grunted. He had a physio/OT assessment getting from wheelchair to bed, and to the loo, and was assessed by the resident registrar, Boris Mak, but not much else happened. Not even a coat hanger here - had to go out and buy a multi-plug and extension cord as insufficient plugs. Saul brought in a little TV (can't get Prime) and I managed to get his computer going so all that's good. His drugs weren't here despite Wd 62 saying the had checked prior to discharge, and I had to go back to Auckland Hospital to get some (actually got half way there and Berry & Ineke were there visiting so brought them over - thanks!) Then an hour later another drug they didn't have! However the place has a good reputation so we have to look past all that and try to be positive about him being here. And on the positive side his physio, Kate, seems excellent and that's really what matters. Hopefully tomorrow Ross will resume writing up his blog himself.
1023pm
Kate (whose surname happens to be McMillan) came and did some on-the-bed exercises with Ross for 10 minutes or so just prior to lunch. Ross got up and had lunch in the wheelchair in the dining room and then went to the gym for some "real" exercise, involving standing from the wheelchair to parallel bars, then "walking" along the parallel bars to the end (with a bit of help in moving the "dud" leg and lots of weight on the arms). Nonetheless some really encouraging movement. Then some bed-based exercises, which he is to continue over the weekend with me. All up post-lunch about 30 minutes. Following this Ross was so utterly fatigued he slept for around 3 hours, and was still pretty exhausted for the remainder of the evening. The fatigue is related to the the stem cell transplant, not helped by the toxoplasmosis, but is known to continue for many months! So it's slowly slowly, but I have no doubt very real progress is being made. Great for him to have visits this evening from Steve, Margot, Ken and Russell, which I know he appreciates despite being too whacked to converse.

Ross a bit sleepy and depressed this morning then the physios came and got him standing on the walking frame for around 10 seconds - very encouraging. Then visit from the psychiatrist who explained that it's very common to have a bit of a dip with the depression at this stage and gave some good advice. Then the nurse (the lovely Belinda) came breezing in and said she'd had a call from Rehab Plus to say they could take him tomorrow morning! (This is after they told the ward yesterday that the waiting list was very long and didn't know when they'd be able to take him). So no time to say goodbye to many of the wonderful staff who have cared for him and a leap into the unknown. The plan was for us to go out tomorrow and have a look at the place. Well - we'll certainly be doing that! Richard came by late morning to say farewell and doesn't want to see Ross for a month! Just needs weekly blood tests. I'm driving him out to Rehab Plus between 10 and 1030am tomorrow morning. Rehab Plus is at 54 Carrington Road, PO Box 44037 Pt Chevalier, Auckland Ph. 09-815 5600 Fax. 09-815 5601 ... and that's about all I know yet! Length of stay - indefinite. Quite coincidentally Katherine came up after work, Ken and Graham brought up a wonderful pasta meal which Sebastian was there to share (carbonara from Spuntinos in Albany), Harry (Harish) arrived, then Steve & Margot, so quite a party for his last night in hospital! Ross very whacked though.

CT brain scan this am showed a reduction in size of the left frontal lobe lesion and also a reduction in the left hemispheric oedema (swelling). The infection around the basal ganglia is unchanged (ie hasn't reduced in size but hasn't increased either). This is good news. Also Ross definitely has yet more movement in the "dud" leg - also very good news. So overall it means that the treatment is having a positive effect. The physio got him standing unaided for a few seconds today, and he was able to sit unsupported. She will bring a walking frame tomorrow - that will be telling! Mood continues to improve and Danielle, the psychiatrist, called again today. Ross has only been on half dose anti-depressant to assess possible side effects for the last 3 days (none to report) but she will increase it to one tablet daily. I expressed my surprise that he had responded so quickly, when it usually takes a week or so for benefits to kick in, and she said that when one normally has good coping skills but has a reactive depression (as opposed to endogenous, or no known external cause) the initial results can be quite dramatic, and this seems to be the case with Ross. The only cloud on the horizon was an episode of marked sweating of his head early evening, but it was just prior to diarrhoea (which unfortunately continues unabated) so I pointed out it may be just that. However the more sinister possible causes distressed him.

A better day. Richard examined Ross this am and felt there was yet more power in the dud leg which is very encouraging. Later Dr Caroline Schultz came by and confirmed that Ross has been accepted by Rehab Plus, and likely to transfer in about 10 days. This is still subject to improvement in CT brain scan, which will be carried out tomorrow morning. However I'm sure it will have improved, as Ross's general mental condition has improved so much. I took him for a big walk (or push in the wheelchair) this pm through the Domain and the glasshouses and back around the playing fields which he enjoyed. His mood has definitely improved. What's more he is starting to grow hair - beard and eyebrows starting to appear after all these months! He's starting to look like Ross again.

I am sure Ross was a little better today in his mood so the new drug seems to be working. No real change anywhere else. Yes visiting is fine - he would love to see you.

We went out to St Lukes today and had lunch with Katherine. However Ross's diarrhoea proved very limiting so had to head back quickly. Can't manage public loos - even the disabled ones - yet. New drug still hadn't arrived when I left but hopefully it will lift Ross's mood. Duncan spent time with him this evening.

No real change except the depression has definitely deepened to the point where his doctors are sufficiently concerned to suggest referral to clinical psychiatry team. Ross agreed. A Dr Danielle Florida from the psych team came round and talked with Ross and felt his depression was pretty "normal" considering all he has been through coupled with his fears for the future etc. but felt he would definitely benefit from a 3rd generation antidepressant (can't remember which one but it works with his Seratonin levels) to lift his mood, particularly in view of the challenges ahead with Rehab+ etc. So starts tomorrow morning on that. I took him for another "walk" today (in the wheelchair) - past the Grafton shops and around the block right past our old house in Carlton Gore Road - even met the new owners again - and had a coffee in the Med School cafe. Good while it lasted but the depression set in again almost as soon as we returned to base. Tonight further difficulty getting his legs comfortable - tried for an hour and eventually had to call on the Sevradol and panadol once more. Ross has suggested I take him for a drive tomorrow. So I'll get him dressed and take him down to the waterfront for a coffee. Great!

A better day today. This am Ross very dejected so I threw him in the wheelchair and took him into the Domain. It was a glorious day and we had a kiosk muffin and fed the geese and went down to the Valkyrie Statue - an area we love. First time Ross has been out of hospital, apart from the abortive night at home. This afternoon a steady stream of visitors - good for his spirits, even though he doesn't talk much! And the neurologist, Ernie Willoughby, came by late this afternoon. Neurological examination revealed Ross now has some good power in the knee of the paralysed leg with a tiny bit of downward pressure of the foot - encouraging signs - also the fine movements in the right hand have improved. But we need hip movement. Neurologist still pretty optimistic of further recovery, though said it could be a long haul (couldn't pin him down as to what "long" might mean). He thinks the recent confusion could be due to the urinary tract infection rather than reducing the dexamethasone (I'm not convinced) but agreed to taper the dex more slowly. Plan is for CT scan of brain early next week just to check that the lesion has reduced in size, and if so discharge to A+ Rehab as planned. (If not back to the neurosurgeons for a biopsy, but we think that scenario is unlikely.) All in all a pretty pleasing day!

Ross slept through last night. He maintains his lucidity. I think over the last week there have been some small but significant gains. He couldn't write a legible word but now can, even though it is slow and less clear than previously. He couldn't sit unaided even for a second (fell to one side) but now can for around 8 seconds. He's best in the mornings and can read part of the Herald until he gets exhausted. But still no improvement in leg/foot. Neurological consultant was meant to come by this afternoon but didn't. Ross was whacked today and the neuropathic pain/discomfort started getting the better of him from around 7pm but he hopefully he settled with Sevradol and panadol around 930pm. He's still taking temazopam at night and it seems to get him through the night which is great. But unfortunately the diarrhoea was rampant today and I couldn't get him to take more than 1 carton of Resource Plus. (He should be on 3/day). Can anyone close to him be with him Sat 4th Nov evening from around 630pm to 930pm? Please email me at deeparks@gmail.com.

After a difficult evening last night Ross settled around 1015pm and had a pretty good sleep. Today was a much better day, aside from the depression/grief which naturally comes through occasionally. The dexamethasone has definitely improved his alertness, and the neuropathic pain was held at bay - ? by the amitriptyline - until around 315 when it again reared its ugly head. Tried repositioning for 3/4 hr then administered Sevradol but didn't help so eventually got him out of bed and into the wheelchair, went for a burn, and then sat him in the Whanau room with other patients in front of the TV, and this repositioning seemed to do the trick (yay - avoided the morphine). However he promised when I left him at 1015pm that he would ring for morphine if he doesn't settle. Many things still make me angry. The physio came round (first time for a week) and when I pointed this out she said, somewhat angrily, that she "couldn't do it for him you know, he has to do it for himself - he's been given exercises to do". I pointed out that he had been totally confused for the preceding three weeks and it might have been a good idea to let the nursing staff or myself know about these (I never saw them) but she still didn't get it. However she did come back later this pm with a sheet of exercises which I have pinned to his wall and already commenced today. I hate this blaming attitude of some of the staff! What's more Ross's weight has dropped to 54.3 kg which is a real concern. He's eating pretty well but the diarrhoea just takes everything out of him again. I will be really pushing the Resource Plus from now on.

We returned Ross to hospital around 6pm last night but he got into the same strife as the previous night at home, with ghastly neuropathic pain in his paralysed leg. It took Sevradol, then two pushes of IV morphine over the space of a couple of hours to finally get it under control. At ward round this am docs said they will try low dose amitriptyline to treat this (yes it's an antidepressant but is also used for pain in low doses - too low to be of benefit for depression.) I also pointed out that Ross's alertness has worsened since the dexamethasone was reduced, so it's going back up to two daily doses as of today. Ross slept a lot today. He is pretty demoralised and his current situation is just ghastly. It's very distressing at the moment. Docs are keen to fob him off to Rehab but I think he's too sick right now to cope.

A terrible night. Ross couldn't get comfortable and I had to turn him every few minutes, put brace on, take it off, put the other one on, take it off, and nothing relieved his discomfort through until round 330am this morning. Then he only slept intermittently, but had a good hour's sleep after breakfast. Equipment not very satifactory, making personal cares difficult, and Ross is still so fatigued the effort of sitting in a chair for longer than half an hour is too much for him. Unfortunately the weekend we looked forward to so much has pretty much turned into a disaster which has made Ross even more depressed (and me). We are taking him back to the hospital this evening. Thanks to the kids and their partners for their wonderful help. Diarrhoea and leg pain persist.

Came home around 11am today. Started out on couch in lounge with wide-screen TV but pretty uncomfortable and not too long before he had to go to bed. Visits from cousin Duncan, and John Howell over from Melbourne for a conference - great. Ross very "slammed" and not an easy day. And not as alert - his dexamethasone has been reduced which I am sure is the cause. However John H was really pleased as he felt he was so much better than when he saw him 10 days ago, which is true. Joss and Saul were great. So hard for Ross being totally dependent at the moment. His bung leg/foot giving him lots of pain and problems (along with everything else!)

No real change. Pretty depressed (who wouldn't be?) Coming home tomorrow am - Katherine & Joss will help get him here and stay the day to help with transfers, and Saul & Jo will come after work tomorrow and stay through to Monday morning. I know the weather forecast isn't good but just to be home should be a big boost. Back to hospital Monday morning. Rob hope you're feeling better and getting plenty of rest!

Not so good today - a bit drowsy and slurred speech. However catheter removed and "performed" 6 hrs later which is positive. Also transferred from bed to wheelchair independently with the physio and had a burn (probably more of a glow actually) around the ward with the physio. Richard came by this pm - very keen for transfer to Rehab Plus. Thinks it will be much more positive than any other option and will push for it. We may try to bring Ross home this weekend for a night or possibly two, which Richard is in favour of. We had it all teed up but for Sat/Sun nights going back Mon pm as Saul has Sun/Mon off but docs want him back in the ward Monday morning as the consultants have their 12 week changeover then, so may have to rethink, but it would be great for him to have a couple of nights at home.

Condition unchanged. Physician from A+ Rehab assessed Ross today. Paralysis higher than we thought and involves his right trunk so unable to sit unsupported. Uncertainty about rehab at this point as the stem cell transplant causes considerable weakness and fatigue for six to eight months, so the idea of strengthening exercises etc for him may be self-defeating. The physician will discuss the case with the director of the Unit. Unfortunately other options include a private hospital until strength returns which would be pretty awful. (Private hospitals are notoriously short staffed and don't have the resources Ross needs). Richard had a long talk with us and while he is still hopeful of "some" recovery the more time goes by the less hopeful the doctors seem to be. I remain optimistic and am trying to keep Ross as positive as I can but it's pretty hard for him right now. Catheter to be removed 6am tomorrow morning.

Ross still lucid. Fortunately he doesn't remember too much about the last couple of weeks. Unfortunately the reality of his situation set in today when the doctors started talking about a transfer the Rehabilitation Unit in Pt Chevalier. However there is a waiting list so may not be for a while yet. Meanwhile we are hopeful that his brain will recover sufficiently for movement to return of course. But the neurologist who told us with such confidence that it would return within 5 - 10 days from commencing treatment must be eating his words. Ken's research suggests 10 to 30 days' treatment for toxoplasmosis is normal recovery time (now at day 14) so there's still hope. However it is now tinged with the real possibility that it might be a very long haul or that he may not walk again, and having to sell our multi-level house etc. Very scary times and difficult for Ross to remain positive when he is still a little confused and stuck in a hospital bed barely able to move. Fear and depression are normal reactions for us both. Catheter remains - nursing staff felt it too early to remove it - I suspect it's easier for them overnight! No plan for further CT now for at least a fortnight.

Mostly a good day. Coped well and enjoyed visits from Saul, Bas/Carolyn, Ken/Louise, and Geoff. However became intermittently confused later this evening. I don't think he drank enough fluid today. (Completely off IV fluids as electrolytes were normal yesterday). Has a bit of a urinary infection from the catheter which is bothering him a bit. May try removing that tomorrow if he remains lucid.

A bit like Ground Hog Day. Ross woke up and panicked because he couldn't move his leg - couldn't remember the past three weeks but it all came back to him when reminded. So a little more confused this morning but seemed less so this afternoon. His non-functioning foot is giving him a lot of cramp-like pain and it's very difficult to sustain a comfortable position. No IV fluids today and maintained lucidity.

What a turn-around! Ross was very lucid this morning and sitting up in the lazyboy with his Ipod when I arrived. He could remember his hallucinations. As the day progressed confusion became more marked. I am certain that the confusion deepens when he is becoming dehydrated, and though I was trying to get him to take fluids he really needs 3 litres a day to maintain his sodium levels. Renuka came around about 445 and I suggested this to her - she examined him and agreed and charted another bag of fluid with improvement again. We watched the NPC final (delayed on Prime) during which he asked me to open the delicious Dutch wafers courtesy of Berry & Ineke to nibble on! However no improvement in the hemiplegia which is now very distressing for him. When I pressed Renuka for an opinion re recovery here she said "we are very hopeful". So are we! But it still takes 2-3 of us to transfer him from the bed to the lazyboy chair right alongside, and back to bed.

Ross says visitors OK if he's lucid, but please phone me first - 0274438899 or home 5298140.