New Year's Eve

Nelson was very sleepy this morning - we found him fast asleep with a pillow over his ear to ensure he stayed that way! He is still sleeping a large part of each day.

It took Nelson 20 minutes or so to spark up to conversation with John, Sharon and their girls Georgia and Grace this afternoon. In the end they had quite a conversation with Nelson about fishing in NZ, hospital food and what Nelson is eating, New Year's Eve fireworks that Nelson said he'll be asleep for... and platform soles.

I hope that everyone who's awake for it enjoys celebrating New Year's Eve. Here's to Nelson's recovery in 2010!

Nice quite Wednesday

Nelson seemed pleased to have a quiet day today! He ate some lovely French cheese that was brought in by the lovely John & Margaret who run the BEST cheese stall at our local market. It was sooo fabulous of them to bring it to him and I have to admit that Nelson did insist on sharing the cheese plus the cointreau balls with his lovely room mate Barry as well as Darius and me - yum!! Not so good for the cholesterol perhaps, but Nelson does need a few more calories and protein so that really did hit the spot - thank you guys so much!!

Nelson was talking quite well today and got extremely irritated when I tried to get him to do some of his speech therapy exercises. Seems to highlight to him what he doesn't do so well now, plus it's hard work for him.

Here he is listening to some music.

Busy Tuesday

Nelson had plenty of visitors this morning - Terry and Heather, then Issy and Alley. Hilton and Coco dropped in as well. Phew! Good thing he had the afternoon off to recover!

Terry commented that Nelson was SO much better after only 10 days - sitting in his chair and talking with them musing on how he didn't know where he was, surprised that where ever it was, it was still in Sydney as he can see the unmistakable skyline from his bed.

Alison went through a lot of old photos to remind Nelson of times gone by (or is that parties gone by??). Nelson was reasonably with it for a surprisingly long time.

Rainy Monday

Nelson walked towards us with a slight spring in his step and a smile on his face, all fresh from his shower. He was quite awake and chatty. He ended up comparing notes with the man in the next bed who had been to the same art school. And there's an artist in one of the beds on the other side of the room too - amazing!

Nelson steadily ate his way through an entire takeaway container of my fried rice with tofu before lunch.

Hilton and Coco visited today, and went back this afternoon to give him some of his mother's rice noodles for dinner! They managed to get some conversation from Nelson as well.

It seems very much that Nelson is on the improve!

Mystery visitor revealed

The other day, you will remember, Kuen took Nelson a mystery visitor. Keith Davis, pictured here, has known Nelson for many years. Nelson had a very good chat with both Keith and Kuen.

And here are the 3 of them.

Greek food

Joan visited Nelson today. He remembered exactly who she was and, as always, woofed down the food she had brought for him.

Nelson woke up when we arrived and  had quite a good chat with Joan once he got going.

As always, it was a delight for Darius and me to see Joan too!

No boxing today

Jacqueline and Michael visited Nelson at lunchtime today and he was very animatedly chatting with them.

When Mick, Darius and I arrived mid afternoon Nelson was just waking up from a sleep. We did some of his speech therapy exercises which he didn't enjoy at all, but he actually did quite well. We reminded him of everyone visiting him on Christmas morning yesterday, which he couldn't remember at all. He was astounded and pleased when we showed him his presents again.

At one point Nelson said to me, "It's so lovely to see you. Each time I see you it's like I haven't seen you".

Before we left, Nelson devoured some home cooked tofu. Then he made sure that Darius took home one of his bananas and happily waved goodbye.

Merry Christmas!

Nelson dealt with Christmas with all the children, Isobelle and me very well for a bit over an hour. The nurses had already given him a santa hat, and Santa even came to the ward and gave him a present!

He was talking to the children and mixing up a few things, but basically very fluent and contextual short bursts of talking.

Here he is complete with bonbon and party hat and some lounging pyjamas given to him by Jacquie.
Nelson was given a few things to help with his occupational therapy incuding an Etchasketch, a daily "tear-off" calendar where you have to complete an unfinished doodle each day, play doh and a "Hungry Caterpillar" 24 piece puzzle - maybe to do with Dairus.

Chats on Wednesday

Yesterday Rhonda and I had a good animated joke with Nelson, including him responding to her Chinese amid jokes, big smiles and lots of laughter. He remarked through this that he didn't like the speech therapy sessions much as he feels they are difficult. I am sure they highlight to him all the things he can't do at the moment, which could be pretty confronting. Nelson spent some time on the balcony and enjoyed a visit from Allan.


This morning Kuen took in a mystery visitor to see Nelson. They reminisced about the past and had a good chat....All will be revealed very soon.

Janette visited this afternoon and found Nelson with some tummy pain. I later learned this was due to urinary retention again. Janette remarked that it was the first time Nelson had actually had a conversation with her.

Barry in the next bed reported that he'd eaten almost all of his meal for lunch - definitely an improvement! Seems he only ordered carrots and salad for dinner, so I gave him some tofu to add to it, which he woofed down.

Social day

Nelson perked up from being quite tired and lethargic when Jacinta and Darren turned up. Jac got a big smile when she told him who she is, and with a big smile told stories of when they were young.

I got to have a chat with the occupational therapist who said how much Nelson enjoyed cooking fried rice in the kitchen a few days ago. Interestingly, when Brenda mentioned it to him several hours later he had a grin from ear to ear and acknowledged he had been cooking earlier in the day - a step forwards in short term memory!

Terry and Heather (who were with us in NZ) also visited today, first time Heather has seen Nelson since before he went into hospital in NZ!

Mark also came to visit - second day in a row, so it was a very social day.

The speech therapist said that there are large parts "missing" from Nelson's speech capabilities - especially in terms of the names of things, and a few other symptoms that are fairly common in people with similar brain injuries. Luckily, his sentence construction is fine and automatic speech is actually quite good, relevant and understandable. This means that although there are significant holes, there is also a lot for her to work with to fill in the gaps.

It really does seem that the physio, speech and occupational therapists are working well together quite intensively with Nelson now he is finally up to it.

Don't need any more Swiss bags

James and Brent both visited a few hours apart and both found Nelson sleeping. Later in the afternoon I found him looking somewhat triumphant sitting up on his bed, dressed with all his stuff packed up in plastic bags next to the bed, photographs taken down from the wall neatly stacked. I must say he'd done a very good job of it. He explained that "we don't need any more Swiss bags", "because I just don't need anything any more", he'll "just go home" he said. Simple! Big smile and a look saying he'd worked it all out at last.

Naturally he was quite agitated and upset when I gently explained that he wasn't quite better enough to come home and that he had to stay in hospital a while longer. Eventually he let me put everything back into the cupboard and drawers and even when Avalon arrived, wouldn't let either of us put the photographs back on the wall.

He ate the last of Brenda's fried rice and a bit of his dinner - in typical Nelson fashion tried to give half of it to me, and got agitated that I wouldn't eat it.

Nelson was really talking a lot today, not necessarily always making sense, and with the usual fixation on certain words that he hears around him and weaving things together that don't match. The man in the bed opposite was talking on the phone to somebody about fish and Nelson was drinking a protein drink so the conversation ended up being about the time when he was drinking his way through a fish and the colour changed as he drank it, and how amazing that was. He started peeling a sticker off the bottle of drink and so started talking about when he was peeling through the layers of the fish as he was drinking it.

He really enjoyed seeing Avalon and chatting with her. One very interesting thing he said during his chat with Avalon was that he has a memory, thinks about it and remembers it again and it's different, then remembers it again and it's different again - a funny feeling! Quite difficult to deal with knowing that is happening, I'm sure!

Day of Lowes

When I arrived mid morning Nelson was asleep but woke up after a while to make faces at Darius and have a hug with him. I was assured by his closest room mate that he'd enthusiastically eaten his rice cakes for breakfast. The meals are really looking a lot nicer since the dietitians intervened!!

The occupational therapist had Nelson cooking fried rice in the kitchen. When asked about it, he had a big smile on his face. I'm sure it must be a relief to do something that is very normal for him.

He's no longer on IV fluids.

Lorraine brought Jun and Eddy to visit this afternoon and Nelson was very pleased to see them all. They said he seemed alert and interacted with them, speaking a little.

Healing day

Today Nelson had a wonderful Aboriginal healing from Phoebe. Nelson seemed to respond well and ended the session asleep. Thank you to Janette and Brenda for organising it. I am certain I gained some benefit from it as well, from my chair on the balcony.

After intervention from the dietitians yesterday, the food Nelson got for dinner today looked very appetising. Even a real salad! Unfortunately he was a bit too tired to eat much of it.

He also has a canular in his tummy for intraveneous fluids as his blood pressure is still very low.

Busy Wednesday

Wow - what a busy day! First shower assessment with the Occupational Therapist (OT) who guided him through not shaving with his toothbrush. She reported him to be careful and taking his time so as not to fall over, quite good at sequencing and knowing what to do without too much prompting. It really has been a while since he shaved himself so one could almost forgive him for not remembering what a razor looks like. The OT said he wasn't great at planning - knowing what to take into the bathroom to do his showering etc - so that's something they will work on.

Janette gave Nelson a healing late morning and Brenda took him in some lunch. I noticed in the visitor book that Janette had spoken Chinese to Nelson and he'd understood her - fantastic!

Physiotherapy this afternoon and then a short speech therapy session which was cut short since the room was too noisy and Nelson was too tired. They are working on naming simple objects, much of which he simply has to re-learn.

In all the excitement I didn't take a photo of Nelson's new clean-shaven look (still has the mo).

Laughter therapy

Raymond and Bev visited Nelson this morning and said Nelson had a huge laugh with them. They played some games and jokes with him and said he seemed to be enjoying their visit and was trying to talk.

Late this afternoon when Darius and I went in he amused Darius for quite a while by making faces at him to make him laugh.

Here he is eating tasty vegetarian Indian food in preference to the hospital food!!

Up and cycling

I was really pleased to find Nelson awake and quite alert when I arrived this afternoon - much better! Maybe some of this improvement is due to the healing Janette gave him yesterday afternoon - thank you!

The physiotherapist came to get him for a session and he managed a walk up the corridor to the gym then do stand up-sit down exercises followed by a 10 minute session peddling this cycle machine. Tomorrow they will get him onto the real gym cycle machine.

The occupational therapist is keen to get started with Nelson in conjunction with the speech therapist and has left exercises next to his bed for visitors to help him with. She said she's been very pleased with the number of times the exercises have been done by visitors - thank you!

Still tired

Asleep when I arrived this morning, Nelson woke up when  a nurse came to take his blood pressure. I was told that he had eaten all his breakfast and had a shower.

He gave me a very sad face and seemed fed up to be in hospital. He needs help to void his bladder and it became apparent that it had been over-full, causing him pain. The doctors are trying to avoid putting in another catheter.

Once his bladder was empty, he seemed much happier and managed to eat quite a bit of juk (rice porridge) that Brenda had made him.

He agreed that he had been very pleased to see Lyndon yesterday.  :-)

Back in rehab

Late yesterday Nelson was moved back into Balmain Rehabilitation hospital after the urologists were happy that he had no issues that needed any further intervention from them.

He is obviously still extremely tired and he was completely out to the world this morning until the nurse came and took his blood pressure. He narrowly escaped having another catheter put in which is a relief.

Nelson seems reasonably happy to eat home cooked food but doesn't seem at all interested in the hospital food now.

Yet another clinical update

As far as his nurse could tell me, the cystoscopy on Nelson today didn't show up anything abnormal.

When I saw Nelson for a short visit this afternoon he seemed bright and happy and only in a small amount of discomfort. He was communicating and very smiley, though not really talking.

He is still on intravenous antibiotics but is hopefully starting to get over the infection.

Another clinical update

Nelson was in good spirits and lucid this morning straight after a shower. He had had a very good rest and was feeling tired, but comfortable.

By the afternoon he had received some lovely flowers from Joan, Zane & Sean - thank you, they are beautiful as you see here!

A little after this shot was taken Nelson was obviously in quite a bit of pain from his bladder.

The doctors have decided to do a cystoscopy (?) tomorrow which means they put a tiny camera up into his bladder to check that everything is clear and basically they can see if there are any straight out "mechanical" issues in there that they need to address. That will be done under local anaesthetic.

Clinical update

Nelson is still in the main hospital until the issue with his catherter is sorted out, but he is stabilised and comfortable.  He is on 2 types of antibiotics as this type of incident very often results in infection.

So far they have not replaced his catherter and are hoping that he can continue without one. He is now fully back on fluids and food and had some intravenous fluids last night after a day of very low fluid intake yesterday.

He seemed in good spirits this morning and had some lucid moments. He is still very tired and low on energy. His walking range has reduced to a distance of about 8 feet or so at a very slow shuffle with rests. Fortunately, he has had some very deep restful sleep and doesn't seem to have experienced quite as much of a setback as with the infections he's had before.

Clinical issue

Nelson was transferred out of the rehab unit in the middle of the night last night as his catherter had become dislodged and he had started bleeding.

Nelson is consious and able to communicate a little, although he is quite upset about this latest development since it was unpleasant the last time... He has lost quite a lot of blood, is on oxygen and in some pain. They have had problems putting in a new catherter so it is possible he may have to go into theatre to have a new one put in. I am waiting for more news on that.

Nelson is extremely tired and not in any state to receive any visitors until this clinical issue is resolved. I will update the blog with his status, and please liaise directly with me before planning a future visit.

Sunday again

Lorraine visited Nelson at lunchtime today and reported him being quite lucid and able to have a little chat with her. When he showed signs of wanting to go to sleep, she tucked him up and left him to rest.

When I arrived a couple of hours later he was really tired from walking around with a nurse earlier, so I left him to rest after only about 15 minutes.

Brighter today

This afternoon Nelson was resting but awake when I arrived. Darius made him smile and they played a good game of peek-a-boo. Nelson looks like he's managed to have some rest and seemed better than he was yesterday.

Thank you so much for the lovely dahlias Erin, they really brighten up the room.

Thanks to all the visitors who have been writing in Nelson's purple book and helping him to complete his exercises that are on the sheets plus in the occupational therapy book next to his bed.

Bit overwhelmed

Nelson was sitting at a table in the common area away from his room when we visited today. His walking is getting fairly steady these days.

Mick White's visit was truncated by the speech pathologists taking Nelson off for a session. Unfortunately Nelson was too tired and seemed to also have a bit of a headache during the session so Nelson had a rest before continuing it later in the day.

Nelson makes a big effort to interact with visitors which is very taxing for him at the moment. In my talking with him today he indicated that he was very tired out by the number of visitors he's received over the past few days, although I do know he appreciates seeing everyone. So that I can make sure you all get to visit Nelson without tiring him out, I would appreciate you checking in with me before you visit if possible and keep your visits relatively short.

Visitors

It seems my post from yesterday got lost somewhere in an electronic bit bucket while my computer was misbehaving.

After having to have a rest break in the middle of a speech therapy session, Nelson indicated that he was worn out by having quite so many visitors. He puts a lot of effort into interacting with visitors which tires him out very quickly.

I know Nelson really appreciates people coming to see him and it's also good therapy in itself. I'd appreciate you contacting me to let me know when you plan to visit him so I can manage a schedule. That way everyone gets to see Nelson without tiring him out.

Tired...

Nelson was dozing when Darius and I arrived late afternoon. He looked exhausted and agreed he was very tired. No talking.

The occupational therapy team have left exercises and various bits and pieces to help Nelson at his bed, so ideally visitors will help him do the exercises. They also recommend talking about people, events and places that Nelson has known to help his memory. They also want us to talk about what day it is, where Nelson is etc to help his recollection and to keep him oriented in time and place.

Visitors today were Isobelle, Terry Ellis and Mick White, and then a short one from Darius and me.

Some lovely flowers had arrived from Interact - thank you!

Bit conflused

By 5pm Nelson was a bit worn out today. He was stressed by having a tummy ache from constapation (left over from the anti-diareagh medication given to him prior to his plane flight on Friday), and distracted by knowing he needed "to go".

He couldn't remember most visitors today, and perhaps in the end there were a few too many. He did remember Allan visited this afternoon, and seemed a bit over-taxed as he'd had Isobelle then Antony and Mark, Rhonda, then Brenda and I.

He did seem pleased to see us, but not a great deal of what he said made sense.

Happy birthday Brenda!

James and Jacqui visited early this morning and reported that Nelson seemed to recognise them and had been in the gym - woohoo! He is certainly walking quite well on his own now. The man in the bed opposite remarked how much improvement he's noticed since we arrived back on Friday evening.

Today is Brenda's birthday and Nelson was very pleased to see her! We chatted about our day at the Dalai Lama teachings and added some sacred images to his collection of things to look at. Nelson did communicate qutie a lot and told us he is getting better all the time. He said he is enjoying having visitors, but the doctor did warn that more than about 2 people around the bed at once could easily overwhelm him as he still does have times of being quite confused.

At the end of our visit this evening he walked us out to the nurse's desk and joked about not crossing the line on the floor, remarking to the nurse, "don't worry, I'm a stayer".

Blast from the past!

Nelson was asleep when I arrived there early this afternoon, and then Mick arrived... Mick has known Nelson for a very long time and when he arrived Nelson woke up, saw him and broke out into a huge grin. Mick did complain of not getting a word in edgewise (joke, Joyce) and partway through the conversation Nelson did actually talk much more than he has for a week (and all of it making complete sense).

Meanwhile I managed to put up Nelson's photographs (according to his art direction) so it looks like "home" a bit more. Lovely smelling flowers from Isobelle and the children, bright flowers were from Jessie & Matt today - delivered when Jessie came to look after Darius for a few hours (bless her!!).

The Occupational Therapist arrived after Mick had left and was pleased with Nelson's physical movement, although his hand grip is a little weak (but at least consistent each side). He is walking without a frame or trolley, but with another person. A proper assessment by a speech therapist will be done in the next few days, which is key to the therapy plan, and the different kinds of therapists will observe him for a few days and confer together to get a picture of where they need to concentrate their efforts.

Brenda made Nelson some special Chinese soup which Avalon and Isobelle gave to him after I'd left.

Visit from the children

Here are the children with Nelson this evening. He has very much enjoyed their visits yesterday and today. I am sure it is difficult for them to see him so quiet when he has always been so communicative in the past.

Nelson is still not actually talking except occasionally in a whisper, but there is much sign language, winking and blinking and some writing. His handwriting is actually not bad - a little shaky, but very clear. The meaning of the words he writes is not always easy to decipher and we all agreed a keyboard may be much easier for him to use.

Having had quite a long conversation with one of the doctors at the hospital today, I have great faith that Nelson will indeed recover over time and I was assured that a complete range of therapies is available to Nelson here. In an email, one of the Rotorua rehabilitation staff said about recovery of people in Nelson's situation that "its always great to witness what I sometimes call a miracle". That says it all!

Nelson is now happy to receive short visits from family where he is in Balmain Hospital. I would ask you to respect that he tires very easily and be aware that he will start to have various occupational therapy sessions during the day.

Back home

The trip was incrediby long - Nelson left the Rotorual hospital at 10:30 am NZ time (that's 8:30 am Sydney time) and finally left Sydney airport after 6pm Sydney time on his way to the hospital here through rush hour traffic. That makes it a ten and a half hour journey back. He managed to have a good nap in the Business Class Lounge in Wellington, and thanks to the fabulous Air New Zealand staff, Mum, Darius and I were welcomed warmly into the lounge too, for a bit of respite on the ground before the longer leg from Wellington back to Sydney.

I definitely wouldn't recommend travel with a toddler and too much hand luggage! Thanks again to Air New Zealand, whose caring service made the trip so much easier and pleasant than it might have been!!  Having a steward take Darius' car seat down the plane from us as soon as they saw Mum and I struggling with everything, childrens' books provided for Darius' entertainment and regularly swapped over on the leg from Rotorua to Wellington in the small propeller plane, and all the small touches not often experienced in the Economy cabin.

The medical escort team were very pleased with the trip, saying after we'd reached Sydney that from their point of view it had been completely uneventful. Their assessment was that Nelson was very tired and starting to get confused because of this, but otherwise perfectly healthy. We said goodbye to Nelson in the airport once his doctor and nurse had helped get our seemingly huge amount of luggage onto 2 trolleys.

Mum and I must have looked completely overloaded with 2 full trolleys plus Darius in the pram (I didn't run anyone over while pushing a trolley plus the pram - who says women can't drive!).  A Quarantine staff member actually pushed the pram through to the inspection table to get our fishing gear checked, then all the way to the exit ramp - thank you!

I visited Nelson alone very briefly today and he has obviously been quite exhausted by the trip. He has had to have a catherter fitted again as he had over 1 litre in his bladder. He is not talking, but dozing or sleeping the whole time. Communication is restricted to blinks and head shakes, and he has indicated he is not up for any other visitors at this point.

In the meantime, this is Rohini (left) who was frequently Nelson's nurse and Amanda (right), Nelson's occupational therapist in Rotorua. Thank you both for providing caring and knowledgeable assistance to Nelson.

Leaving friends ...

Today I watched Nelson eat dinner with his knife, fork and spoon very properly. I  don't stay for meals very often, but a week ago he seemed to be using his fork for everything. Today he even placed his knife and fork together neatly on the plate when he'd finished eating his fish.

We are finally on our way back home to Sydney tomorrow (after 4 1/2 weeks!!). The travel insurance people have organised a nurse and a doctor to accompany Nelson to make sure he gets there safe and sound and they assessed him as fit to travel today. They'll take him directly to a rehabilitation facility in Sydney from the airport.

Since he's already tired most of the time now, the doctors have warned that the trip will knock the stuffing out of Nelson, so he won't be up for visitors for a little while. When he is, obviously the children are the priority!

In the meantime, we are sad to be leaving new-found friends here in Rotorua. So many of the staff at the hospital have provided exceptional care to both Nelson and me. Many of them I didn't manage to photograph, but we are both very grateful to them all.

Donna was one of Nelson's main nurses in the Rehab Unit.

Willem (right) is the unit's social worker and was a huge help to me, listening patiently and providing very down to earth advice. Noel (left) is one of the most energetic and cheerful people I think I've ever met, and also makes very good cups of tea!

Nurse Vicki (right) even donated toys chosen specially by her 3 year old son for Darius to play with. Some of those toys are now his favourites and will be essential for keeping the peace all the way back home!

Dr David (gee - middle?) always professional but also ready with a wave and a smile and to listen to any issues about his patients. Donna (left) always seems to be cheerful and happy. It makes all the difference to see familiar smiling faces!

Dr Jan Gregson inspired me with complete confidence. She always listened carefully to what was going on and was simultaneously direct and compassionate. Jan always went out of her way to ensure I was completely kept up to date. She dealt with all the paperwork around the transfer in a way that the team expressed was uncommonly helpful.

This is the lovely Jess who gave me hope from her personal experiences and made sure Nelson was going to be mobile on the plane home. She also gave Darius a special bubble maker from her top drawer!

Marg gave Darius a goodbye "aeroplane swing" which he loved!

Inconvenient

"Inconvenient" was the word of the day today. I found Nelson awake and reading the newspaper in the dining area when I arrived, expecting that by 10:30 he might well be flaked out. He did manage a short conversation that all made sense (during which he remarked something was "inconvenient" - quite right!).

Since it was such a beautiful day, we went to sit outside but that was short lived as Nelson suddenly went through his normally slow motion standing routine with his walking trolley surpirsingly quickly and was off to the loo.... and again.... and again.... and again (upset tummy is a common side effect of the antibiotics that he's on). Eventually after several trips back and forth from the lovely sun filled deck (23 degrees C - ideal!) he decided it was time to return to his room.

I took this shot of ICU nurses Margaret and Andrea who have continued to be so supportive and helpful to us all just before they whisked me away to have lunch at "the good cafe across the road". 

When we returned Nelson had also had his lunch and wanted to go back to his room for a rest. When he indicated that he wanted to be left alone to sleep, I went off and finally (after 4 weeks here!!) saw an important bit of Rotorua - the inside of the Polynesian Spa. I had a long soak in the mineral hot pools and a mud massage (sounds awful, but feels great!).

Connection

This morning I got to the hospital only a little while before lunchtime. Nelson was asleep but woke up when I got there. Not much communication verbally at all, but we have worked out a code of 1 blink for yes, 2 blinks for no. This works well when Nelson is really tired and not up to verbal communication or even shaking and nodding his head (a great deal of the time).

By the time lunch was imminent, he had woken up a bit more and I helped him get up and walk down to the dining area ready for lunch. When his tortilla filled with salad arrived, he gave a wry smile and asked, "are you sure this is mine?" since his gluten free "soft" meals often look very unappetising!

When I came back an hour or so later he was already back in his bed. Thank you to Elly Dyk and Sarah Jenkinson (with the green hair!!) who sent cards that arrived today.

When I came back after having gone off for a haircut, he was asleep again but woke up when I said I would leave him to rest... He managed a bit of a conversation about something that was obviously important and worrying him, but that he couldn't articulate to me. Eventually he either gave up or actually did forget what he'd been talking about.

As he remarked the other day to someone, "One minute I'm clear and the next minute it's all gone..... Don't know."

Wall full of photos

Thank you to James, Debbie & Mike, Stavroula and Alley & Adrian who all sent lovely photos and cards that arrived today!! I have hung up what I could fit in the limited space now available in Nelson's new room which has more window than wall. Nelson chose the ones he wanted from the wide choice available!

Nelson really appreciated receiving everything today and seemed to recognise people which was great. Actually a few days ago a lovely card arrived from Nehler (I hope I have the spelling right) and much to my surprise Nelson deciphered the signature at the bottom !!

The rest of the time today he was very very tired, and didn't even want to see Darius this morning. He seemed very happy when I offerred to go and leave him to sleep after only half an hour of just sitting on his bed while he slept, then opening his "fan mail" this afternoon.

I don't think I can fit any more photographs up at the moment, and I have some that have been sent by email still to be printed ...

Snoozey Sunday

Nelson was asleep both times I visited today. He'd had a shower and then been down to the dining room for his breakfast and that had exhausted him, so he'd gone back to his bed for a sleep. Mum, Darius and I arrived at around 10 and amused ourselves for almost an hour in the lounge before he woke up.

He was too tired to walk, so I wheeled him down the hall sitting on his walking trolley, with Darius wiggling on his lap. Whispering was about all he could manage and then we left him not long before his lunch. All that he said to me made complete sense at least.

When I returned alone this afternoon he was again fast asleep, although he did open his eyes and acknowledge me so I stayed sitting on the bed. Noel, one of the staff was nice enough to make me a cup of tea. When 4:45 rolled around I helped Nelson get up and walk down to the dining room for dinner. I saw him using his knife and fork together and it was the first time I had seen him not eating everything just with his fork.

While we were sitting in the dining area for dinner he looked at the clock and asked me whether it was evening or morning. I suspect having 2 sleeps per day is quite disorienting for him, so I ran through his day's with him and it seemed to make sense to him.

Hospital food...

This is Nelson having a little sarcastic laugh at the hospital food put before him. He is still on a soft diet, so his meals sometimes look slightly less appetising than the others. NZ is the land of the kumerah, so Nelson was very perplexed to have such an odd looking vegetable in the middle of his plate, and needed some convincing that he should probably try eating it...

I managed to visit in Nelson's 2 1 hour long awake times today (normally quite difficult to time). He'd slept in until 9 am after falling asleep fully clothed before dinner the previous night. He hadn't been up long so was very perky when I arrived. He had a shower soon afterwards and seemed exhausted by that. We did make the walk down the hall to the lounge, with Nelson leaning heavily on his trolley walker.

We sat outside in the sunshine for a short while until Nelson was complaining of the cold, despite having 3 layers on. I felt fine in just a thin cotton shirt and jeans. Normally I'm the cold one, and Nelson is too warm!

Yesterday late afternoon Nelson was moved out of his single room into a room he shares with another man.  This means that his wall of photographs is temporarily in a pile. He is quite particular where everything goes, so I'm sure that will be a job to do together tomorrow. He wasn't up to doing it today.

When I returned with Darius and my mother in the late afternoon, I found him eating lunch as he had been asleep since I'd left him at 12. He managed to read aloud to Darius from a hardware shop bargains catalogue and was very interactive with him looking at the pictures in a fishing magazine.

I did ask him whether he felt he was up to speaking to the children on the phone as I know they'd love to hear his voice, but his answer was a very definite "no" - too difficult at this point. Definitely nothing personal!!

Friday comes around

Well, Nelson seemed exhausted most of the day today. He'd been up for an hour and a half or so in the morning, and had then made his way back to his room. By the time we got there (late today as we were moving out of our house) he was fast asleep. Darius woke him up with a huggle which Nelson really enjoyed. He also enjoyed hearing the children's news that I read from the blog comments - thanks Isobelle.

We left him having lunch in his bed as he didn't feel able to make it down to the dining area and back.

When I came back in the afternoon he was still sleeping, but seemed to appreciate my being there while he dozed. He didn't seem at all keen on eating dinner, and had missed yesterday's dinner as well.

He is still on intravenous antibiotics for the next few days, and hopefully that will mean the end of his bacterial infection.

We have moved into a cottage a bit further out of town. The owners are really lovely and have a 3 year old, so lots of lovely toys for Darius to play with. He was delighted to find many colourful talking toys in the cupboard and a car to get into and out of in their garden.

Yes, that is steam rising from the natural Rotorua hot pools right near the hospital, and it's like it all the time!

Sleepy Thursday

Nelson was up bright and early this morning so was showered and dressed before breakfast. Darius, Mum and I arrived just as he was finishing his cup of tea left over from breakfast. He used his walking trolley to get from the dining area to the lounge to spend time with us.


Since he'd got up early, he was tired by 9:30 and fell asleep in the chair. After a quick nap he decided he wanted to return to his room, so slowly got up and used his trolley to get up the hallway to get into bed. He did make sure that the nurses making his bed put things in the right order! It was good to see him smiling at them joking with him.

Later in the day the occupational therapist reported that he'd remembered the first part of her name which impressed her (calling her Anna when her name is Amanda).

We enjoyed a beautiful warm sunny afternoon - the last one in the rose-filled garden as we leave the house tomorrow morning. These ones have the most heavenly scent!

Rainy Wednesday

This morning my mother, Darius and I all made the trip into the hospital to see Nelson when he is at his best in the day. We found him eating breakfast in the main dining area with the other patients. He managed to walk from the table holding Darius' hand to the nearby lounge, leaving his walking trolley for Darius to play with later.

Here he is explaining the technicalities of night photography and passing judgement on magazine layout with Darius and Sheila.

The doctors arrived and we found that Nelson's catherter had finally been removed (again). Hopefully, he won't go into urinary retention as he has on the previous 2 occasions - third time lucky. That would be another potential source of infection removed! He is still on intravenous antibiotics, so he still has a canular in his arm. His antibiotics are being slightly altered to ensure that a small possible infection on one of his hands is addressed as well as the other more systemic infection that is almost gone now.

Nelson called me by my name today, as he had yesterday for the first time. He referred to Darius by name today as well while talking with my mother. This is a far cry from only a week ago when he couldn't tell me who I was, or who someone called Darius might be.

Just over 2 hours later we left Nelson back on his bed totally exhausted.

Now...

Since the bacterial infection has been mostly thwarted by antibiotics, Nelson was a bit better today. He made it down to the dining area for both breakfast and lunch for the first time in over 3 days. One of the nurses said she caught him walking up the corridor on his own and asked him where he was going. "Back to my room" was his reply, and he walked straight to his room and lay down on the bed. She said that yesterday she wouldn't have been confident that he knew which room was his, so she was pleasantly surprised.

He had an occupational therapay session early while he was still alert and I arrived before 10 to find today crossed off on the calendar and him almost tired out. However, he really enjoyed receiving a set of photographs of Marlon and Lyndon working away on a project to produce some night vision equipment. They are up on the wall with all the other photos.

After a couple of hours sleeping he woke up and asked me the day several times.

During my visit this afternoon he started talking about how he wasn't feeling well and that he'd been very ill, which was worrying him.

I had a a chat with his senior doctor and her assessment was that his speech and cognition are severely affected and that his recovery will be slow over many months - as if he'd had a stroke. His intravenous anti-viral treatment is almost completed, so the emphasis is now on occupational therapy to help with speech and memory.

The view from Nelson's room window is very NZ.

Then what?

Rotorua Hospital's Rehabilitation Unit has a lovely common lounge and dining area and outside deck with spectacular views of Lake Rotorua. It really does seem as though the patients should be having evening cocktails at 5:30 instead of a hospital meal!

After a few days, Nelson could walk around using a frame with wheels, and by Wed 11 Nov was eating his meals in the common area. Late that week I would find him in the lounge when I went to visit him, and would often take him out onto the deck in the lovely sunny weather - usually with his "friend" the intravenous machine.

His wakeful periods were full of conversation that mostly didn't really make sense, but it was very good to see him up and about.

After half an hour of "conversation", Nelson was totally exhausted and would often conk out for hours directly afterwards.

The doctors suspected some mild seizure activity might be causing this extreme tiredness, so they increased his anti-convulsant medication which does seem to have had a positive effect.

Unfortunately, over the weekend of 14 & 15 Nov Nelson again contracted a secondary infection that has put him back several days . He is once again taking all meals in his room and seems more confused and less able to do things for himself again.

Today, he had improved and I visited in time to be there for the last part of his occupational therapy session where he worked out for the first time that he'd actually been in hospital for almost 3 weeks, which amazed and shocked him. Understanding this was a major step forward, as previously he hadn't been able to put the pieces together through his confused state. The occupational therapy continues to concentrate very much on his immediate term memory as he has difficulty remembering things that have just happened (like what day it is today which was just being discussed, or what he had for breakfast or lunch today).

I have started a "memory wall" directly opposite his bed from photos I have with me, and things that have been sent to Nelson or me so far. He is doing very well with who everyone is. The nurses help by looking at the board with him and asking him about everyone.

On 9 November, our incredibly supportive friend Allan left to return to Sydney (as we had been scheduled to do). Darius and I are both so glad he was travelling with us as he was a great help in many ways!

My mother arrived on the evening of 9 Nov to help and she has been a godsend as well. Darius was very pleased to see his Grandma and she gets the most smiles especially first thing in the morning!

Nurses Andrea and Margaret still come down from ICU to check on how we are all doing. I feel like I'm part of the community here which really helps!

What the hell happened?

On 26 October we got on a plane and went to lovely NZ to join friends, planning a few days of fly fishing for trout near Taupo then off to visit other friends elsewhere.

Since Nelson had a headache, I drove us from Auckland airport down to Turangi where the fish are. The next morning Nelson was unstoppable, rising at 5:45 am to get ready to meet the river guide with his equally keen friends. The trouble was, he seemed to be behaving strangely and sometimes using the wrong words for things. I put it down to the aftermath of a very bad headache and asked his friends to keep their eyes on him.

By the end of the day I had made an appointment at the local medical centre to have him checked out. By then, Nelson couldn't tell me how I have my tea, couldn't seem to remember what he had just been doing (much more than the rest of us do) and was coming out with the wrong words for things - all in a monotone that is not like him at all.

The doctor sent us on to the hospital at Taupo and Nelson was taken by Ambulance up to Rotorua hospital where they have all the right equipment to scan people's brains. When they scanned Nelson they found damage to the left temporal lobe had resulted from the viral infection.

The next day I left our son Darius in the care of our friends who nominated themselves Proxy Grandparents (PGPs) and, with Nelson's friend Allan, took the 2 hour drive up to Rotorua to visit him. Over the next couple of days the initial diagnosis of Encephalitis was confirmed. Nelson's perception of things got progressively worse and he became quite agitated and unable to relate to what was going on.

By Thursday 29th Nelson had had a mild seizure so was put on anti-convulsive medication. That required he be heart monitored as a precaution. By later that evening he was in Intensive Care (ICU) completely sedated and a machine was breathing for him as he'd been deemed to not be protecting his own airways.

Luckily, by the next morning he could be taken off the machine and breathe by himself again. He went on to stay in ICU until 7 November, gradually regaining the functionality of his brain bit by bit as the viral infection abated slowly with medication and Nelson's own immune functions.

Nelson's special healer, Wolf, lives a 2 hour drive away and has visited several times to work with Nelson. He works along side the medical treatment so that Nelson is gaining the full benefit of western medicine as well as the alternative approach (including minerals, vitamin and herbal). When Wolf and his wife Lara showed up at the hospital, Nelson suddenly calmed down, was able to focus and (at that point uncharacteristically) knew exactly who they were.

Luckily for us, ICU has a very full toy cupboard which Darius enjoyed once we finally took him to see Nelson (first time Sat 31 Oct). It kept him from turning on oxygen taps, pulling tubes that he definitely shouldn't pull on or running off too far with Nelson's walking frame. Thank goodness for our friend Allan who tirelessly ran around after Darius and entertained him, stopping him from eating all the food on offer from another family inhabiting the ICU waiting/family area, leaving me to be able to pay attention to what the doctors and nurses reported about Nelson's status.

The first thing Darius did when he saw Nelson was to give him a big hug!

During Nelson's time in ICU there were various issues like Nelson's sodium levels being perilously low, and a secondary bacterial infection that was eventually proven to be growing on his PortaCath (used for administering chemotherapy and not used for that since October 2008), which was removed on 6 Nov.

The PGPs all went home on Sunday 1 Nov (worn out from their constant toddler duties for which I am eternally grateful!) and Darius, Allan and I moved up to Rotorua to be near the hospital. Fortunately we found a lovely holiday house rental which is a peaceful oasis for us to go home to (and we can see the hospital across the lake!).


On 7 Nov Nelson's bacterial infection was gone and his sodium levels were steadily returning to normal so he was finally able to be moved out into the hospital's Rehabilitation Unit...