Communication experiments

Mike was looking alert and intelligent when I arrived tonight. He tried mouthing some words at me, but I did not 'get it'. I checked that he could pick out letters of the alphabet pretty well from a chart. Next I put a pen in his right hand and held some paper on a backing board up in front of him. I guided his hand to write 'Mike' and then let his hand do the writing. He gave it a go and made some indecipherable squiggley lines before the pen 'ran out' from being held horizontal for too long. Must take a pencil next time. From time to time Mike tried to communicate by lifting his forearm vertically from his horizontal upper arm, pointing his forefinger (like a gun) and lowering the forearm towards my head. Then he repeated the manouvre, this time with his forefinger and index fingers extended as one. I did not get it. Apparently he had tried the same thing first with Tracy then with Lee earlier in the day, but they did not 'get it' either. He did not want me to do anything for him, so presumably he was trying to communicate something.

I did get one message clearly. I was drinking some coffee by his bedside. Mike moved his arm over to me to get my attention. He made a circle of his fingers and shifted the circle to his lips where he tilted an invisible 'cup' into his mouth. I asked him if he wanted a cup of coffee, and scored a hit. Since he could not see the coffee, this is our strongest indication to date that he has a sense of smell. Unfortunately even a well person without a 'trachy' could not be expected to handle hot coffee while lying on his back. So Mike just got another reason for continuing to focus on his recovery. I don't think he needed another reason, but he seemed to take it well.

He seems to be making good progress too with clearing his throat. That is necessary in order to get rid of his 'trachy'. Then we will be able to see how well he can speak.

Bryce

1st April:Tentative progress

So now Mike is fairly settled in Cavit. They are taking great care of him and he seems comfortable. It's a much more comfortable feeling for us knowing that the staff know a heap more than we do about what care he needs. If we aren't at the bedside, they have someone always there, even through the night.

We're gradually learning some of the issues involved in tiredness for Mike. A severe brain injury causes immense fatigue and Mike's bad chest infection increases that tiredness. The Cavit people say that when a brain injured person gets over-tired the brain shuts down for a while and will often lose what it has learnt in the last few days. For example, the nurses got him in a wheelchair and I wheeled him out to a quiet sheltered courtyard where we sat in the sun for about 15 minutes. After even that short time, Mike was exhausted and needed to sleep for about an hour. A complicating factor is that often when the patient is agitated and moving a lot, this is because they are very tired. It's so hard to adjust to when he has always been such a high energy person.

On the bright side, Mike is getting a bit more muscle control and when he is alert he seems to follow more. Mike seems to really like all your messages, so we tell him who has commented on the blog and we read him all your cards and e-mails. When it is from someone we don't know, usually Mike seems to recognise the name. The plus of having a friend with short term memory loss is that your one message must appear new to him, even if we've repeated it lots. Mike also seems to like looking at the cards too. We are not sure if he is reading anything and anyway fatigue would make it hard to concentrate for long on reading. But Mike's Uncle Stuart gave him a book to look at it and he appeared to read the title of it on the title page: "Over My Head". At least he nodded yes when asked if he could read it, and shook his head when asked if the words were "Three Blind Mice".

Mike also took a few steps today while being supported by the physio and a nurse. He is able to hold his head up when standing, but seems only to do so if you stand in front of him and ask him to look at you. Still a long way to go before he can consider Ironman training, but good progress.

News for Non-Economists

We have some good news and some bad news for non-economists.

The good news is that Mike fell asleep last night while I was reading him an article from The Economist.

The bad news was that the article was not about economics. (It was about the differences between the sexes that might arise because the Y chromosone has only around 100 genes as against 1000 for the X chromosone. (Yes, females have two X chromosones, not two Y chromosones.))

Bryce

March 31st - Finally the move

Tracy here. Mike finally moved into Cavit ABI Rehabilitation (04 570 9284) today. This was after he succeeded in falling out of his hospital bed. The nurse left him briefly to help a nurse in another room, thinking that Mike looked quiet, and came back to find him on the floor. Mike managed to scare not only the hospital staff, who got people in to check his obs and his head, and all that, but also himself - he was quite subdued for the rest of the day. Possibly it made Mike realise how much progress he has to make physically. Fortunately he doesn't seem to have done himself any damage.

It feels really great to have Mike at Cavit - much more homely and personal, and it feels like real progress. Mike's desperate to be on the move physically but not surprisingly has a lot of work to do on the physical basics first. We're going to have to sort out a programme with Cavit that will enable him to work hard at the things he wants to work at. Another learning curve, I guess.

I gave him Mary's latest postcard, and he turned it over and studied the back intently - I'm not sure if he was reading it or trying to, or simply enjoying holding something in his hands. A lovely card arrived from Marie and Ulli(?), telling Mike he had a choice now - choosing whether he was going to be fit again. I read it to Mike, and asked him if he chose to be fit again, and he nodded.

Now Mike is back in rehabilitation, he could probably do with an increase in visitors. He is in a room with two others, so Lee will try to talk to the Cavit staff tomorrow about suitable times and so on. So if you're planning on coming, just give one of us a call.

Dialogues with Mike 30 March

The following encouraging dialogues with Mike yesterday may be worth recording.

Dad to Mike:
"It was a bummer that the accident happened."
Small nod from Mike -- affirmative.
Dad to Mike:
"But we can't change the past."
Mike shakes his head -- negative.
Dad to Mike:
"But we can change the future."
Nod from Mike -- affirmative.
____________________

Sister Tracy to Mike:
Does Dad work for CS First Boston?
Mike shakes his head.
Does Dad work for First NZ Capital?
Mike shakes his head.
Does Dad work for Capital Economics?
Mike nods
Is Dad's name Bill?
Mike shakes his head.
Is Dad's name Bryce?
Mike nods
Does Dad like "X's" economic policies?
Mike shakes his head. (He was correct!)
Is Don Brash prime minister?
Mike nods.
____________________

Mike also nodded affirmative when asked if he works for Charles River Associates and when asked if James M is his boss.

30th March: Not so fast Mr Bond

So there we all were. Late morning. All tidied up, ready for business class bed travel over to Cavit. But wait. The medics want Mike to be seen by the ENT specialist before he goes. Hmm goes the specialist, haaa goes the specialist....this should have happened, that should have happened, why hasn't such and such been done. The upshot of the hmming and haaaing is that Mike is still in the medical ward. The specialist decided the cuff around the ‘trachy’ should be deflated and Mike would need to be monitored for twenty four hours.

I’m not sure why all this was so stressful, but it was. So time for some fresh legs - Bryce. Hmmm says Doctor (Econ) B.D. Wilkinson..."The patient is just very bored, frustrated and desperately wanting some physical exercise." Treatment: (1) : Read him the business news section of The Independent for extended periods. Now for any normal person this treatment plan would make them writhe with boredom, but the two other family economists insist it was just what Mike needed. Unfortunately no independent witnesses have come forward to verify their theory.
(2) : Let the bloke pursue his own exercise program. The upshot was that Mike turned himself onto his front while holding his head off the pillow in order to protect his trachy. Roll over Beethoven. Then with a massive effort, he got enough strength into his weak right arm to push his front off the mattress while pulling his knees under his hips. In no time he had lifted himself into a vertical position, head swaying but determinedly controlled by the neck. Wow! It was simultaneously scaryingly unstable and utterly impressive. His determination and willpower were amazing. He did it several times and failed many more times. Moreover, his stamina was 'off the scale', he kept at it for perhaps 90 minutes. By then Bryce felt like a sleep himself.

So this is all looking like great progress, if we can just manage the safety angle.
Again, many thanks for all your comments. Mike would be astounded at the support from everyone out there. We've been telling him about each one and saving the whole things for him as it grows. Now that he is so much more alert we will gradually take them all in to read to him.

Lee

Yesterday’s posting

Our apologies for missing the blog last night. We all went in different directions and didn’t think about it till this morning. A good day for Mike yesterday. He is cleared to go back to Cavit today, so the next stage of rehab can start. The time in the medical ward hasn’t been a standstill in progress. He’s moving lots more and trying to turn over on to his front – a bit difficult with various tubes still in, but a good idea. He is a getting a little more pro-active in the communication process – giving his Mum a kiss goodbye etc.

The nurses on the medical ward have been great. They are very caring and were always looking out for Mike’s wider comfort and communication needs.

The hospital speech language therapist came by and created him a requests chart. Now as long as you hold the chart near his hand he can point to: ‘Please be quiet’ ‘I’d like some music’ etc. We forgot to add in “Please read me more economics’! On second thoughts, with two other economists in the family it perhaps should be ‘Please, no more economics’.

Once Mike has settled back into Cavit and we have an in idea of the daily routine, we will talk to the Cavit staff about increasing his number of visitors. So if you are planning to visit, just phone us to check.

Easter Monday - Honesty is the Best Policy

Another 'not much in the way of news' day continues. Mike, when asked by his nurse Diane if he'd like her to go away, nodded his head in reply. Mum and Dad's years of careful training in manners have been happily ignored in favour of what was probably the truth. However we are not sure if Mike wants Diane to go away because he's bored of her company or because he thinks she's interfering with his escape plans. On the courtesy side, Mike did reply yes when asked if he'd like Diane to visit him after he's moved to Cavit. He is also getting very good at figuring his way out of any position the nurses put him in, indicating that his problem-solving skills are still in existance.

The plan is still to move Mike back to Cavit rehab tomorrow, but that depends on the doctors' decision tomorrow morning. Hopefully after that the next step is to get that trachie out his throat, so if Mike can talk then he can directly tell people he'd like them to go away.

Sunday 27 April – Mike much the same

Mike seemed to be much the same today. He is still on antibiotics, still has the tracheotomy in his throat and the peg in his stomach and still has to have his hands tied to protect all the tubes. I sense that as he gets more alert he gets more uncomfortable with this state of affairs. Who wouldn’t? On the other hand, he is progressing OK. His nurse reports that his temperature has been normal for four days now and that his last chest X-ray showed that he was improving.

It's a challenge to know how much we're managing to communicate with Mike. It's partly trying to choose the right channel for how he's feeling. We're still talking lots about past holidays and he seems to remember them enough to nod at suitable moments. We're thankful that we did the same sort of thing so often - we think that five camping holidays become one in the memory and that memory is so much stronger. Our friend Mary has supplied 3 folders of photos and comments on some of our summer holidays and he's quite intent as we work our way through them. Kent and Amanda's mini disc is popular and the format of some talking and then a song suits the interruptions involved in the fairly intensive nursing Mike requires.
Bryce and Lee