Ladan’s condition has remained quite similar, she has been very stable for the most part with no major upsets since July. For the last week or two Ladan has been much sleepier than usual, this does coincide with some changes in her medication known to have this potential side-effect and we have mentioned it to Ladan’s consultant but he hasn’t shared his thoughts on it as yet.
Plans for Ladan’s continuing care have been changing frequently over the last 7 months, though Ladan has remained in the same room in the Hawthorns neuro-rehabilitation centre in Peterlee throughout this time, finally it looks like we may have a plan in place that will involve Ladan moving back to Newcastle in the coming weeks.
On the 24th April Ladan is due to go back, for one week, to the General Hospital in Newcastle where she will have a few tests and procedures carried out. After that it is hoped that Ladan will move into a care home called “The Minories” which has a bed available for her, arrangements have not yet been finalised for this.
Until a couple of weeks ago the plan was for Ladan to remain in Peterlee untilo January 2007 when a room would hopefully be available in a new regional centre for neuro-rehabilition currently under construction in Newcastle, the alternative of moving to The Minories does not provide the same on-site support of rehabilitation professions but instead calls in the expertise from a community disability service.
I always give a more in depth account of what has been observed with Ladan since the last update, it is still the case that in most respects Ladan does not seem to have recovered to the point she was at prior to coming to the the Hawthorns in Peterlee, a point at which she had an unexpected additional haemorrhage which resulted in Ladan becoming much sleepier, less responsive and left her eyes in a very divergent state. In comparison to that point in time, however, I would say that a very little amount of progress is apparent.
As I have mentioned before, Ladan was being tested using a system called SMART, this testing system examines responses to stimuli for each of the 5 senses and records the response on a scale that has several potential scores in between no response and a normal conscious response, the tests are repeated several times and then the results are collected to show the best consistent response for each sense, and also the best isolated response. Ladan’s best responses were generally isolated ones, particulary in touch and taste, responses were also recorded for hearing but the Occupational Therapists carrying out the tests did not record any responses to sight or smell. The kinds of responses I am referring to above are reactive, and what differentiates how “normal” they are comes down to how much the stimulation seems to be recognised (ie. a good taste or a bad taste or where on the body you are being touched) and how sensible the response is (such as grimacing and spitting out a bad taste or pulling away from the location where you are touched). Most of the responses that are observed in a SMART programme are not generally used to determine a person’s level of consciousness, they’re only relevance is in drawing up an action plan for improved continuing treatment.
Whilst the results found are relatively basic this is the first time that any assessment has confirmed that Ladan does react to some things other than painful stimulation, such as sound. As a family we were of course aware of this and of certain other consistent responses that Ladan has, such as to light, but being able to tell the therapists that Ladan will respond in a certain way to certain stimulus doesn’t have a major impact on the way that tests are carried out and what results are recorded. The theory is that when the testing program is complete Ladan’s strongest sense or senses can be indentified and a programme of stimulation can be drawn up to focus on that.
In Ladan’s case the SMART testing is unfortunately on hold as the Occupational Therapist who has been most involved in Ladan’s case has unfortunately broken her shoulder on a skiing trip and has been out of action for a while. She was hoping to continue after Ladan’s visit to the General Hospital but if Ladan moves to The Minories she will no longer have responsibility for her. The testing has apparently shown the Ladan is best suited to have single mode stimulation, that is to say sound or vision or touch or smell or taste, of course, in reality it is hard to remove all light and all sound from Ladan’s environment so it is not possible to do this completely.
Following the initial SMART results a structured programme has been drawn up for Ladan which encourage periods of substantial rest following periods during which stimulation may be present. I was bizarrely unpopular for wanting to ensure Ladan’s comfort and lack of stimulation during these periods by remaining present and keeping the curtains drawn and door closed to minimise noise from the ward and outdoor light, but you can read more about that in the “Awareness” and “James update” sections below.
Moving on to more of those “little” things, Ladan continues to become slightly stronger physically in her movements when she does move, Ladan doesn’t move much other than when she is irritated or coughing. There are also many occasions when I feel that Ladan seems to join in with movements when I ask her too, this has always been the case since few days into her coma, though I am only aware of one other care worker having believed it to be the case… it happens when I am firm with Ladan in requesting that she joins in and I tell her clearly if I feel I am doing all the work, it can take a few requests but there is something, a change, that comes about, and this has also become stronger with Ladan’s gradually increasing strength. I mentioned it to Ladan’s consultant physio in the hope she might be interested in experiencing it and giving me her opinion on it but she wasn’t, they have their own ways of checking for participative abilities which they have tried without possitive result.
I’ve been smiled at once or twice…back in January I was between places to stay and decided to book into a Bed and Breakfast for a couple of nights, this allowed me to spend even more time with Ladan than usual. On two of the days that I spent more than 12 hours around Ladan she, toward the end of the day on opening her eyes after some rest seemed to clock me still in the room and smiled, the first time was for a few seconds but the second lasted nearer 20 or 30 seconds and I had a chance to mentally check and recheck what I was seeing by noting the other changes in her face that the smile brought about. It was a real joy to witness, Ladan hadn’t smiled like that since before the seizure that upset her recovery in December 2004, and hasn’t done it since either.