29th April:Yet another PB

The PBs are coming thick and fast at present, but apparently slow down after a while. With the support of the physio and me, Mike walked from his room to the day room for lunch. He said his feet feel less heavy and more in control. He also managed to conduct an economics education session on opportunity cost, for the physio and speech language therapist, so all is not lost! He managed to walk back again after lunch, but then fell asleep really fast.

I had a chat with the physio about the difference in rehab between brain damage through stroke and through injury. She said a stroke is usually clearly in one part of the brain, so the medics can fairly accurately predict the deficits and what rehab will be required. With Mike's diffuse brain injury, they can't see where the particular severe injury is located, thus they have no idea what the deficits will be and how they will combine. So the rehab has to be very individual and they have to constantly adjust to the deficits they find. She also said that while stroke patients experience fatigue, it is not as severe as in a brain injury it doesn't hit as fast and the worst fatigue disappears relatively quickly. Thus the rehab can be lengthier and more energetic.

There endeth my lesson for the day!

Lee

28 April:A PCB: Personal Coke Best

They installed a Coke dispensing machine in Cavit today, and Mike got to drink the first bottle. Now that is a milestone for Mike, his first Coke since 20 February.

The nurses are pleased, even amazed, by his progress. They are telling him now that they thought he was likely to die when he had the lung infection. I took the chance to ask how much weight he had lost at his worst. A nurse checked the records and declared that his lowest recorded weight was 52 kg. He is now heading in the right direction, being back up to 54 kg. So that is about a 20 percent loss from his pre-accident 'Ironman' weight. I gather that a 20 percent weight loss is not unusual for this injury.

He is feeding himself very well now. Coke is one of the hardest things to manage, for reasons I don't really understand. It looks like they might be able to remove the tube from his stomach in a week or two.

As he improves they are stepping up the rehab programme. A mini target is presumably to get him to be able to take a step or two on his own. The extra physio tires him out, of course. So he needs lots of rest and if he misses out on rest he does not sleep well at night, which sets him back, and they have to cut back on the physio. So there seems to be no end in sight to the need to limit his visitors where possible. Currently available slots are being filled by friends passing through or heading off to do their OE. We are amazed by the number of you who are heading off overseas. So, Wellingtonians, please continue to be patient.

Bryce

26th April: On with the rehab

Today Mike started in on more intensive rehab. First stop was speech language therapy. Mike's right side weakness affects the right side of his face, mouth muscles and even his tongue, so there is a lot of hard basic work to be done to get more clarity of speech. Next stop was physio and the realisation of the difficulty of really basic exercises, such as very light lat pulldowns. One problem is that after about three reps of these really light exercises, Mike is utterly exhausted. However, Mike being Mike, he was thrilled to be exercising again and more challenged than perturbed about the long journey to fitness.

We had a chat about all the resting Mike's having to do, or what Mike calls 'waiting'. One of the nurses is from Chile, so Mike's getting him to teach him some Spanish. I think learning even a little of another language should help forge those new neural pathways he needs. Plus presumably it will cheer him up about everyone else heading overseas.

We're still having to really carefully manage Mike's visitors. Partly it's because of basic eternal tiredness and also to conserve his energy for the rehab work.

Regards

Lee

25th April: Things chugging along well

Our apologies for a gap of a couple of days. It just shows that we are a lot more relaxed about Mike. He's still progressing well. The rehab side has been quiet over the break, but Mike has a series of exercises he is working on. They look so unbelieveably basic when I think about him pre-accident, but they represent unbelieveable progress compared to post-accident. His right side is still a bit shaky but a whole lot better.

The main challenge at present is still the one of managing his fatigue. Mike doesn't generally realise that he is tired, but he's working on it. He really wants to be working more on his walking, but it can only be in very short bursts followed by lengthy rests.

He's busy trying to remember events in February, but most of the month before the acccident is a blank at this stage. We think he will get a lot of it back, but he seems to need to piece the whole time together. If any of you can add some pieces of his 6 weeks prior to the accident, Mike would be really pleased. I thought he'd been to an Ironman camp a few weeks before, but he has no recollection of that particular camp.

Mike's close friends, Kim and Paul, came down from Tauranga for the weekend to see him. He really enjoyed that and it was good for us to see through there eyes how much progress he has made since they last saw him in Auckland. Kim and Paul are soon off overseas and I think Mike feels he might be the last young person left in New Zealand.

Regards

Lee

April 22nd: Mike rejoins the cafe society

A really great milestone today. I got to wheel Mike in his wheelchair down to the Zoom Cafe in the Hutt Hospital and we bought a great coffee. A superb feeling. On the way we met one of the physios from the medical ward who was amazed to see us out and about. It wasn't till later that I realised that the Post Traumatic Amnesia meant that Mike couldn't remember any of the time in the medical ward, or any of the people - physios or otherwise. He had been awake, laughing, semi-communicating etc, but couldn't actually remember any of it.


Now Mike can eat, he is starting to put on weight and is now back up in the 40kg class having added nearly two kilos. Still quite a way to go.

21 April - Cards & more cards

Just realised that no one had put up a post last night.

Mike is still working on memorising all the cards in his room, including the ones we've put up behind his head. He wants us to bring in all the cards he has received - I'm not sure if he realises how many those are. He can now read the messages in the cards himself and he is very good at recognising the postcards sent in daily by Mary and John from Japan.

He's eating pasta for lunch now, a big step towards a civilised diet. We're getting closer to a steak and chips, or what I think is Mike's most important goal: a Coke.

April 20th:Family birthday

Today was TJ's birthday. After quite a lot of figuring out, we held a small birthday celebration around Mike's bedside so he wouldn't feel left out of family events. It was a challenge getting a birthday cake Mike could handle, plus a few birthday people, all without tiring him too much. So the cake was a rather runny panna cotta with candles leaning at alarming angles. The people were Gran and Uncle Jack who got shunted in and out in about 15 minutes, including the time it took to unwrap presents, light candles and sing happy birthday. TJ and I decided it was quite a memorable birthday in its own way.

Today I discovered that one of Mike's efforts at occupying himself involves memorising who has sent each cards that we have displayed on the walls. It's a bit like a remote form of that old kids card game, Memory. I don't think he has taken on board that we're rotating about 150 cards through his wall display!

Lee

19th April:Quiet day

Mike seems in good spirits at present. His friend Kylie visited to say goodbye as she is off to the UK shortly. We keep expecting Mike to find it difficult seeing so many friends heading off on their OEs, but he seems okay about it. I presume sadness at what he has lost and is missing out on will kick in some time, but not yet, it seems.

His main achievement today was to eat a small pottle of yoghurt managing the spoon and the pottle. It was great to have independent eating. You never think what a complicated process that is. Mike needs to really concentrate and can't manage if any distractions occur, even just someone talking. The art of slow eating. The yoghurt took about half an hour. Makes me realise how much we shove food down, usually while yacking away. Mike did a little bit of walking today. Whilst his feet don't work well at all yet, he's getting better control over his torso and head. He has to really concentrate on each element to manage it though.

Regards

Lee

18th April:Where are we at now Mike's out of PTA

Today Mike is officially out of Post Traumatic Amnesia. While this is good news, this PTA stage has taken a long time (over 7 weeks). The length fits the pattern of a serious brain injury and means that Mike is very unlikely to make a 100% recovery. On the other hand, his progress so far has been considerably better expected, so there is a lot of reason to think that he will do far better than the average.

This all means that there is a really long way to go - we don't know how long, or where the journey is leading us. Because Mike has been so fragile, he has not been able to manage any active rehab, but this can start now. Such are his fatigue levels, that rehab will start with 5 minutes in the morning and 5 minutes in the afternoon and initially even that small amount will exhaust him.

Still, onward and upward. Mike had a PBB today - Personal Banana Best. His banana eating speed has increased! Those of you who know Mike's banana eating prowess will be relieved by his progress in this area.

Regards

Lee

17th April: Quiet normality

A quiet weekend, but very satisfying for Mike. Tracy went to visit him this afternoon and there he was on his own (no longer needing someone constantly with him during the day), sitting in bed, CD player on (under his control by a remote), and reading a book. It must feel great for Mike to get a sense of his own space back and some control over what he is doing. I must ask him that tomorrow.

The next major steps I presume will be on the action side. They have stayed away from that waiting for the trachy wound to heal. Apparently any major movement puts the stitches under too much pressure. Mike, meanwhile is eying his speedos!

Regards

Lee

Mike's Fortitude & Resilience

I was reading Michael the lead story on the business page this morning. It was about the issue of a single banking regulator for Australasia. Mike said, out of the blue, and with equanimity: "It doesn't really matter if I don't recover enough to be able to work as an economist again. If that happens, I will find something else to do." Knowing how much Mike has invested in economics, how much he likes it, how much he was enjoying CRA, and how seriously he was exploring (and saving for) the option of a US PhD in economics, I was enormously impressed by his insight, positive approach, fortitude and resilience. What a lesson in confronting a worst fear, and defanging it!

I was so stunned that I forgot to make the joke I had prepared for this contingency. It was "Don't worry if you find you can't think straight as an economist any more Mike, that is an essential requirement for a central planner in government."

So while Mike is working hard at overcoming real immediate problems, like learning how to swallow food again, he is also working out how to get control of his future -- and I don't think he's going to become a central planner!

I also get the impression that Mike has got his head around the issue Lee raised -- of the need to build a generous amount of time for rest into the optimal recovery plan. Now he happily reports on both his latest "PBs" and his degree of rest when asked how he is doing. He is also quick to say that he is tired, when asked.

Kent and Amanda, Mike sends his thanks for your 3rd minidisk. He was listening to your disks again early this morning, well before normal breakfast time.

Bryce

15th April:Still more food

Mike's food range is ever widening. Today he added to his eating range, soft thin toast and honey and later hash browns and tomato sauce (Of course it must be Watties, Uncle Gerald). Mike's grin when he saw the sauce would've been a good advert. The concentration required for these less liquid foods is really challenging and exhausting, but of course the rewards are great. The Speech Language Therapists think in two weeks Mike will be consuming all his food by mouth.

If you want a comparison, do a big swallow of your saliva three times in quick succession. The difficulty of that third swallow is kind of remotely like the concentration Mike needs for every swallow.

On that strange note - Good night!

Lee

14th April:Food, glorious food

More progress on the eating front today. Mike ate mushy weetbix in the morning and scrambled egg in the afternoon. Clearly both tasted like ambrosia but the concentration required is amazing. No surprise to all Mike's SP'TH friends (Speech Language Therapy),but astounding to us uninitiated mortals. After a one-egg scrambled egg, he was exhausted and needed a lengthy sleep.

The challenge for Mike currently is laying off the goal-oriented stuff and just focusing on the resting process. I've decided that our society places a huge emphasis generally on goal setting and persistence and Mike has focused on it much more than the average person would. This brain injury stuff needs the opposite behaviour. At this stage persistence and determination gets in the way of recovery. It's a balance because obviously he's needing to work hard to re-learn these skills. However, if he does slightly too much, the exhaustion really sets him back, he even forgets what he just learnt. For example in one session Mike will seem to have made good progress with learning to walk, in the next session if he's tired his walking will have greatly regressed.

You can see that it's an upside down process for all of us and we're having to learn different ways of helping him through the challenges.

Regards to you all

Lee

13th April:A taste of the real world

A red letter day for Mike. Firstly he finally managed some caffeine intake - in the morning some Cyclops Coffee Yoghurt and in the afternoon 6 sips of flat white coffee (cooled) whilst hovered over by anxious nurses monitoring swallowing. So he's a big step closer to that goal of going to the Zoom cafe in the hospital and having a coffee.

Secondly Mike's boss visited and Mike was clearly really pleased to be in touch with the work team. He had lots of questions about what was happening in the firm. Each day his voice is getting closer to his old voice. I think once the trachy wound is healed over, it will be pretty much his old voice.

One on-going challenge for Mike at present is keeping still, so he can rest as much as possible. All his life Mike has always been either asleep or in full action. He doesn't seem bored, but those legs just keep fidgeting around. Apparently it's part of the brain recovery process to have to build awareness of what those extremities are doing.

So a good day in terms of progress and a good day for Mike's sense of well-being.

Regards

Lee

Addendum
It took two Cavit staff about 15 minutes to make it possible for Mike to have his coffee. I watched closely to see if he would remember to thank them, like the Mike of old. No worries. He gave them his full trademark smile and thanked them handsomely and graciously for the delicious coffee. Mike still seems to be the gentleman we all knew and loved, and the world somehow seems to be a better place.
Bryce

13 April Visitor Update - No Visitors Please Until Further Notice

Michael is still very easily tired. It will be great if his cousins, friends and colleagues can visit when he is feeling stronger.

12th April: One step forward, one backwards

Yesterday we were so pleased that Mike had his trachy out. Onward and upward we thought, but really it's all such a fragile process. Last night Mike was very restless and agitated and the nurses think this was caused by fatigue resulting from the trachy removal. (Four injections in your neck aren't exactly nice!) Today as a result he was very tired and drawn. Mike was very pleased to start on food through his mouth. They started very carefully using pureed food, but this afternoon his temperature went up, so there was a possibility that he was aspirating some of the food risking another chest infection.

So it is just not even progress. However, Mike in good Ironman style is collecting PBs. One was that he talked to us via Tracy's cell phone - it's a sign of modern life for that to seem such a major step forward! The other PB was that he fed himself the pureed fruit. This would seem a tiny step, but the small motor skills involved are difficult. Yesterday he had a go at wiping his face with a flannel and found that required a huge input of energy and co-ordination.

Here's hoping he's settled down by tomorrow.

Lee

12 April Visitor Update - Still no visitors

Michael is tired after physiotherapy this morning, and Cavit advise that it would be best if he had no visitors today other than immediate family.

Mike's 3rd Blog - 11 April

I've had a good day; its great to have the trachy out.

11 April Visiting Notice -- Still no visiting please

Excellent news. Michael had the "trachy" - the breathing tube inserted directly into his windpipe - removed this morning. Assuming he does not have any problems now in keeping his windpipe clear by himself, the next steps will presumably be for him to take food and then drink progressively through his mouth, rather than directly into the stomach through the peg. Mike is getting closer to his goal of coffee and coke. He also has his eye on a steak (further out) at Phillip's new restaurant -- Lonestar.
Still no visitors please, as Michael is still having to take things quietly.

10th April: Continuing peaceful progress

Mike felt he had a good day today. He walked about 4 metres taking all his own weight, just needing the nurses for support. That’s a big improvement from just a couple of days ago.

His voice is getting stronger too and if the trachy comes out tomorrow as planned, he should gradually sound a lot clearer. His right side that was so slow to get going is improving daily. Each day he can do increasing amounts of things for himself. With his improved sleep we’re hoping he’ll be strong enough soon for some more intensive rehabilitation.

The contrast with the over-hyped Mike of a week ago is quite marked. It’s a peaceful life at this stage. We’re visiting him just one person at a time, to simplify things for him and we read to him for long periods. All those cards and messages you sent are getting double value – each day I take in three or four from the pile to read to him. So many arrived while he was unconscious that they’re all new to him. We always talk for a bit about each person and I’m surprised at the detail he remembers about all of you.

When he can receive visitors, take care you’re feeling fit. He’s already persuaded his big sister and his Chilean nurse, Juan, that they should do a half marathon with him. It’s hard to imagine at this stage, but what a superb goal.

Thanks for all your messages, they are sustaining to us as well as Mike.

Lee