3rd January 2011

Sorry about the lack of updates, Vodafone went down, 'phones as well!!
After Steven's usual "walk" and meet with his dog on Saturday,
he became agitated, and remained so for the rest of the day. However
we did have a couple of periods of calm spells where he tried to
"talk" using the alphabet and flash cards. We also have a white board
on which he can"write" and remove easily. Steven held the pen,
correctly, and wrote something which was difficult to read due to
overwriting, but looked like 4 separate words. He was clearly agitated
because I couldn't understand it. He then spelt "food" on the
alphabet. When asked whether the food was for him or us, he banged the
"NO" card hard and banged the bed. He indicated he wanted to write
again, and he wrote exactly the same 4 word phrase. This time it was
slightly clearer to read. I could now see "food for the ??" This last
word had an "i" and an "s" in it. I asked Steven to spell it on the
alphabet. He spelt "chinese". So I said "food for the chinese", he
banged the "YES" card hard several times. So now I was asking Steven,
was the chinese for him, us, or could he remember a chinese. All these
questions were met with a definite angry "NO". He then wrote "for
them". After many questions, the sessions ended, both of us in
frustration. Paul and Pauline returned, I related the story as above,
and after requests from them he again wrote the same phrase, and again
confirmed "chinese" with the "YES" card. So......any ideas anyone??
Added to this he spelt out that he was "confused", and later wrote a
word on the board that looked like "stress", but he became tired and
agitated and wouldn't confirm anything. He remained agitated
throughout the evening and night, only having about 3hrs sleep in
short spells, despite an extra sleeping pill.
Medicines. The pills he is on are complex, but help to control
(according to Google!!):- insomnia; brain disorders; Torettes
syndrome; schizophrenia; anti'-inflamatory; blood pressure; stomach
ulcers; muscle relaxant; and decongestant.
Before the internet went down, I was able to do some research
into the Glasgow scale of coma. This scale scores the amount of
activity in eyes, verbal, and body responses. Using my knowledge of
Steven, he scores the max' 4 for eye responses, (they open to sound
etc and they move); he scores 4 (out of 5) for verbal, this is given
automatically due to him being unable to talk due to his tracheotomy,
but is "conversing" with other methods; and, this is where the
confusion is..... he scores 3 (out of 6) for body response due to him
being insensitive to pain, yet.....he responds to commands such as
"lift arms" and "throw the ball", which would give him a score of the
max' 6. So on my reckoning his coma scale is between 11 and 14 (out of
15). But basically he's still "asleep"!!!! I honestly believe that the
analogy I used about him being similar to a person in a nightmare is
true, yet he can "convers" and apparently remember. We feel helpless
and hopeless as well as very confused ourselves. We have to remember
to be very patient.
Today Sunday, Steven went to sleep at 8am and woke at 10.30am.
Paul and Pauline took him for a "walk" towards the main road, where
Steven watched the cars and motorbikes with interest. At one point
Paul said "shall I cross the road and pinch an orange" Steven put his
thumb up!! Towards the end of the "walk" he became agitated, but on
the return to the room, they met with Veronica and family, so they all
went to the animals for another short walk, and Steven seemed happier.
Steven was returned for dinner and "schoolwork". He then became
agitated when Veronica's visit ended. I returned to him. Steven has
now learnt to touch his teeth when he wants a sip of water, and to put
his arms in the air in a circle when he wants a cuddle.
Info' from Paul's evening/night shift, Steven touched his eye,
and with some clever thinking Paul realised that Steven wanted the
alphabet. Steven then spelt out "HOT", so Paul fanned him. Then Paul
went to make Steven's meal, leaving the alphabet on the bed. At some
point Steven must have moved his hand down the bed, picked up the
alphabet and was fanning himself with it. Paul continued the fanning
until Steven waved for him to stop. Another bad nights sleep despite
extra drug in his feed. This morning, Monday, fast asleep as we took
him to physio. We always tell the physio's and doctors of all changes
in Steven for them to evaluate treatment and progress.
love
Terry
Nuria......muy gracias por la visita, nosotros muy contento.
Mark.......hope above answers your questions re' coma.