Tuesday, 25 January 2011

24th January 2011post 2

well after a bad night for Steven and Paul, Steven had a good day, quite responsive, only a little sleep, and no agitation until 8.30pm, calmed down now, let's hope for a quiet night. He doesn't now have to wear his cervical collar at all. He listened intently to our conversations today, and has started to do facial expressions using mouth and forehead, brilliant. Still hungry!!!!

24th January 2011

well, after a couple of reasonable days, Steven decided to go back to his agitated state. Saturday evening it started, with a bit of agitation, then he slept until 3.30am Sunday morning, and that was it. He just wouldn't settle. At one point he spelt out "can you wake up Paul" I said I couldn't wake him up (3.30am) and anyway I can do whatever Paul can do. He wanted Paul. So I asked why, and he spelt "cos hes my brother". He finally went to sleep at 8am. He was agitated most of Sunday, some sleep, but no "conversation". He is constantly hungry, even immediately after food, not really surprised with all the energy he's using. He has a new sign now, he rubs his belly when he's hungry, and puts his hands together like in prayer to mean please. He is coping well with the tracheotomy temporarily closed, and when I clean it, it's not so dirty. He has learnt to cough. He can lick his lips. His hearing seems to have improved (though he doesn't do what we tell him!!;-) ) He has amazing intelligence, all it needs now is the co-ordination between mind and body.
Sunday night another bad night for Paul, no sleep at all despite extra medication, so Steven won't be a lot of use in the physio' today, we'll see.

Thursday, 20 January 2011

20th January 2011

after a horrible weekend, especially Tuesday, Tuesday night Steven slept a full nights sleep. He was calm all day Wednesday and had a few short sleeps. At one point we covered him with a blanket, and he actually said the words "one more", well, we were just shocked, and thought, is this yet another turn-around. His medication has been doubled, he had almost 30 pills Wednesday, but......Wednesday night, back to normal, another bad night for him and Paul. Calming words of encouragement are of no use. Agitated, and with repeated calls for the nurses all night, right up until 6.30am when he finally went to sleep.
I took him to physio' fast asleep with yet another story of the night's events for the doctors.
There are people here of all ages, from babes in arms to senior citizens, all have all manner of disabilities, from all manner of causes. Without exception, all of them, at least 40 that we see, are all calm and indeed in most cases happy. Some are totally unaware of what's happening to them. Most are aware and are adapting or recovering. Steven seems to be aware of what's happened to him, and cannot do anything about it, and is frightened, when he comes out of physio', he is in a state of fear. The doctors cannot explain it, other than Steven is a different case to the others. In the relatively short time of being here we've already seen people move from wheelchairs to walking frames, or from walking frames to walking sticks, so the place does remarkable work, we've seen improvements in Steven, the staff here know what they're doing. We have no complaint whatsoever, we just want Steven to sleep during the night, so that we can help him during the daytime with is "studies".
The removal of the tracheotomy has been postponed until next Wednesday.
Regarding my operation, the doctor here has told me, in view of what's happening, it would be best to wait as long as possible, or wait for excessive pain, necessitating an operation!!!
It will be good to get off this roller-coaster of emotions.

19th January 2011

no easy way to say any of this. We've had a really rough time
with Steven over the last few days. To cut a long story short, Steven
has been extremely violent all weekend, day and night. He's had no
sleep, which means, neither have we, and the lack of sleep makes him
worse. Paul and I both had successive nights of fighting Steven and
getting help from the nurses and night doctors. Steven has done very
little in the way of "conversation", and we've been unable to block
his tracheotomy for any great length if time. It culminated Tuesday
lunchtime, when he tried to rip out his tracheotomy, and if it wasn't
for Paul's fast reactions, he would have succeeded. Paul couldn't
remove Steven's fingers, and had to emergency call the nurses, and it
took 4 of them to just hold him down. Steven was finally restarined
with straps and body belt, but he continued to fight. At this point he
indicated to Paul that he wanted to "write" sometning. Using the
alphabet he spelt "finish me". We were obviously called to the
hospital, but nothing any of us could say or do anything. He was
eventually given morphine and sleeping injections, these on top of all
his other medicines. He fought the medicine, until he finally
succumbed, after being fed by 2 nurses, giving Paul a richly deserved
break. Paul stayed the night, and Steven had a good drug induced
sleep. However this morning I relieved Paul early. I went to Steven
for my usual hug, after which he indicated he wanted to "write"
something. Using the alphabet he spelt "let me die". I asked him if he
meant what he wrote, and he put up his thumb meaning yes. Needless to
say that upset me and Paul intensely. He has remained calm, and he's
gone to physio'. The doctors are aware of what's going on. We are
constantly being told to be strong, be patient, and all this is
normal. Well we don't feel strong, we're not that patient, and it
certainly isn't normal to us. Steven, and for that matter, us, have
had no constant proper sleep now for 25 days, and we're beginning to
feel depressed. We can't imagine what Steven is going through, we just
want him better. Steven is the only patient here who is aware of
what's happening to him, and is therefore constantly upset and
agitated. I'm not saying Steven is a special case (although he is to
us), but all the other patients seem to be permanently calm. Steven is
the only one awake at night. We are the only ones wandering the
corridors at night asking for help from the nurses. Steven is the only
one leaving physio' in an agitated state.
Hope for better news soon.

Saturday, 15 January 2011

Saturday 15th January 2011

Thursday evening Steven went to sleep at about 9pm, but come
4am, the fun and games started!! He was the worst I'd seen him,
totally out of control. Lots of visits from the nurses, but nothing
could be done. Couldn't get him settled. No messages at all. The
nurses have to be so careful with the medication, so I just had to
"suck it in". Of course as soon as he'd had his breakfast, he was fast
asleep. Went down to physio' in this state!! Goodness knows what they
can do with him like that, because he obviously lasted the two hour
session. It was a gorgeous day, Friday, so we went out for his "walk"
and he wasn't happy about that. Paul and Pauline met us in the
grounds, and we all just chatted, trying to get Steven's involvement,
but all he wanted to do was got to his room as indicated by the
alphabet. So, I said to him, that if he could answer 3 memory
questions, I'd take him in after one extra little "walk", he agreed.
He correctly named his nephew and niece. Now a little story.....1yr
ago, whilst leaving Guardamar Sunday market, Steven and Pauline saw a
man throw something out of a car window. Steven and Pauline stopped
and found a puppy, a smelly thing he named Pongo, and took him home.
They took him to the vet' for check-up the next day, and the rest is
history, we still have the dog. So I only said to Steven "Why did you
keep the dog", his reply by alphabet was "Cos I felt sorry" (his
shortening of word, his reply). Definately a good memory and he
deserved his trip to his room. The rest of the day he was calm. Paul
later returned from the shops with a laser pen. He gave it to Steven,
and asked Steven to point it at various targets around the room, this
he did quite successfully, so now Paul is making words to stick on the
wall, for Steven to point to and make sentences. Work in progress,
I'll let you know what happens. Friday evening, Steven had a horrible
defiant look on his face, a look I've seen so many times from when he
was a small child. Friday night though, Paul had a worse night with
Steven than I did. Again out of control, but this time, Steven was
able to spell that he was in a lot of pain, (in a way a good sign, up
to now, he's experienced only little pain) mainly in his legs and
feet. Despite painkillers and sleeping pills he was awake most of the
night. It seems to us, that Steven is going to extremes in his
recovery, at times he seems much calmer and lucid than before, and as
an opposite, he's more unsettled as well, hope these are all good
signs. This morning, Saturday, Steven has had his wounds on his feet
dressed, another painkiller, and is now asleep. I'll let him sleep,
and then get him outside this afternoon, in the warm sunshine. Under
better circumstances this area is quite beautiful.

Monday, 10 January 2011

10th January 2011

Steven was fighting all day Saturday, right through to Sunday
evening. He never slept at all Saturday night. He was continually
fighting, trying to get out of bed, arms and legs flailing, and head
squashed into the cushions surrounding the bed. He ripped out his
catheter 3 times, ripped off his nappy, pulled at his tracheotomy. I
had to call the nurses 3 times for help, he was uncontrollable. He has
extra pills and injections to make him sleep, no effect. The doctor
was called, and fortunately he saw him in this state, but couldn't
give any more medication, so I just had to put up with it, but I'm not
trained or prepared for this sort of thing. This continued throughout
the next day, except for a quiet period in the wheelchair and when
Veronica was here. But he started again, and even pushed Veronica
away, not a big problem because he does that with us, but was probably
upsetting for Veronica. He continued fighting into the afternoon and
evening, when again I spoke to the nurses and threatened to leave him
for them to care for him. They gave the usual platitudes thinking I
was exaggerating, until he pulled out his catheter in front of them,
and tugged at his throat. So we had to restrain him with his arm
brace, don't like doing it but he's going to seriously injure himself
if allowed to carry on like this. I upset the nurses with a language
problem, because I said they only see him for 10 minutes, I have him
in this state for 10hours, so they said they have lots of patients. Of
course they have, I know that, and that they have a lot of work to do,
I was trying to say I have to handle him for 10hours on my own. Steven
has today been answering in Spanish to my questions posed in
English!!! I feel though that he's got worse since the revelation that
he's having a dream of a car crash. He's asked for "my room", "water",
"go to the road", and "I want to go to the toilet". He said he had no
pain to me, nurse, and doctor, and then 5 minutes later complained of
pain in his right hip. Today no pain. Is it his mind playing tricks,
don't know. Is he in a coma, don't know. He doesn't react to any pain
such as injections. He stares straight through you. He's pulling
wildly at sheets, and pillows. He won't "say" what's going on. We are
totally confused, frustrated, and knackered (Nuria, that's slang for
very tired!!)
Rant over, a bad day, sorry.

Steven went to sleep at 9.30pm, remained so all night except
for a couple of times when I could tell he wanted turning over to
another side. So he slept without any extra medication.

best regards

8th January 2011

a few improvements.
As you know, Steven goes to physio' twice a day. When we take
him, he now pretends he's asleep (I can tell!!). When we collect him,
he's really upset and agitated usually with his arms in the air for a
cuddle. Friday afternoon he was exactly the same. At the room I spoke
to him as norma, and he wanted the alphabet. He spelt out "I dont want
to go back to rehab" Steven shortened "dont" and "rehab" not me!!!
When I asked why he spelt "pain". They must really put him through
it!! He also put up two fingers, in this case meaning he didn't have
to go back until Monday, 2 days off.
As you also know sometimes he sleeps very bad, if at all.
Friday night he had about 6hrs sleep, and at about 5am he was crying.
I asked him what was the matter, he used the alphabet to spell "dream"
So I said what dream, he spelt "car crash". Well I didn't and don't
know what to do. He's obviously remembered the crash, and he knows
he's in hospital, he's not stupid, he's going to put two and two
together and to realise that the crash is the reason he's there. So we
won't push the issue until we see the main doctor on Tuesday, we don't
want to upset him or cause a problem with his recovery.
Today Saturday while Paul was caring for him, Steven spelt
"toilet" pointing to the toilet in the room. So Paul explained that to
Just these three things show the level of awareness he's coming to.

Friday, 7 January 2011

Photos of Steven

5th January 2011

a good day Tuesday where he was responsive to questions and was
calm, that is until evening. Another bad night for Paul. Steven was
pulling off his sheets, and generally being uncontrollable. At about
2am Steven spelt out to Paul, "papa" and pointing to the ceiling. Paul
went through many possibilities for papa, from me, to late grandads,
the pope and even God, but got no answer, confused or what. Steven has
been fairly good today, Wednesday, but on his "walk" he spelt
"priest", again he wouldn't elaborate, confused or what. Steven now
has a different brace on his right arm to help straighten it, he
doesn't like it. He also has a brace on his left hand, now not only
doesn't he like it, neither do we, at a time when he's beginning to
animate, he has a brace on him!!!!!. We'll do what the doctors say,
but Steven will be given the chance to "talk" to us, that's just as
important as far as we're concerned. Steven has also got an infection
in his feeding tube, that may be the cause of his restlessness, let's
hope treatment helps.
There's a report in one of our local free papers about
fundraising for Steven. They make a crucial error in the report.
Steven IS STILL IN a coma, despite all his activities, we can't
understand it, but that's it. And what people must understand is that
Steven could stay in any stage of coma, but we are optimistic that
he'll continue to improve.

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.
Nuria......muy gracias por la visita, nosotros muy contento.
Mark.......hope above answers your questions re' coma.