My blog has become a little geekish over the last couple of posts, and I may have another very geekish post up my sleeve soon too, so I thought I should jump in with an update about Ladan as that is, after all, one of the main things for which a lot of people visit this blog.

The summer, if we are still calling it that, has been a very stable time for Ladan, no real fears of infection or other problems. It would have been nice to get Ladan out quite a lot but it has been a very wet summer, finding a good day has been difficult. There have, however, been about three trips out this summer, two to the flat where I spend some of the morning sleeping and one trip - a tiny bit further afield - to Ladan’s uncle’s house in the north of Gosforth.  Ladan’s uncle Shahram and his family regularly host Bar-B-Qs and meals at their home for the family and Ladan would often go there while she was living in Newcastle before we got married, indeed I visited there quite often while visiting Ladan up here. It was, therefore, a familiar environment to take Ladan to and also presented an opportunity for the family to spend time with Ladan in a more natural environment.

We are taking small steps forward toward getting Ladan out of the nursing home and into a normal house or bungalow, but things cannot move forward properly until we have a property, and that probably involves a wait of indefinite duration for a local housing association to have a suitable property available. Our case manager is fixing up a meeting with somebody who can help talk me through the various other options that might exist and their consequences.

A long while ago I mentioned a medicine called levodopa which I was hoping we could try with Ladan some time. It is normally used in Parkinsons disease but has been found to have a dramatic influence upon a small number of people who are in a minimally conscious state. There have been a few barriers to trying this medication, including a lack of clear information on how to use the medication in this situation and questions over Ladan’s stability. Ladan’s GPs have been very positive in this matter, as they have been over moving Ladan into home environment, and we now seem to have overcome most of the barriers, so it looks promising that we may be trying this medicine very soon. I will, of course, update this blog with the results of the trial… I might also write a fuller introduction to what it is all about in the next day or two… encourage me to do so if you would wish to read it.

The colder autumn and winter months are, generally, the ones where Ladan is at greater risk of developing chest infections. Over the last few years I think Ladan has had to go onto anti-biotics at least once during this period, last year we ended up in hospital twice and so I am hoping for a smoother ride through this winter.

I remain aware that many people are keeping Ladan in their thoughts and prayers and this a blessing for which I am truly very grateful and am deeply moved by. Ladan has remained very strong through this ordeal, rather than deteriorating she becomes increasingly stable, so please do keep those prayers coming if you can. Thank you.

It has been so long since I posted to this blog that I had forgotten how to do it. My apologies to those of you who have been checking regularly for updates.

Thank you all very much indeed for saying prayers two months ago, I was very touched by the response. Ladan has remained stable, and there is slightly increased activity toward getting Ladan and I into a bungalow together so that I can be the one primarily looking after her (which I am to some extent anyway, but not at home).

I have been trying to start up a small business offering some web, internet and multimedia services, I’m still working out how I can best use the gaps of time between the interruptions that come from being with and caring for Ladan, this will become easier when we live together properly but even now I am optimistic that I am getting there slowly.

I have had Ladan back to the flat I currently sleep in a few times, and then we had quite a few trips to the local park, Jesmond Dene, where Ladan took me for a walk the first time I came to visit her in Newcastle. With summer looming, albeit the cooler Newcastle version of summer, it was decided that Ladan should have a daily tablet to prevent against hay fever, unfortunately this knocked Ladan for six and made her much sleepier, since then we have not been out, Ladan has stopped taking the tablets as a daily medicine, there have been a couple of other medicines that Ladan has had over the last few weeks too and I am hoping that soon we can be back to our normal regime and I will be taking Ladan out again a few times over the “summer”. When we go out we do not take any nurses or special equipment with us, so I prefer to have Ladan a state of medical fitness and awareness that I am familiar with. We have yet to have the first non-family member come to visit us and spend time in the flat with us, which will feel like a big step toward normality.

Firstly, there is nothing wrong that impels me to write this.

Thursday 10th April, please may I request that all our friends, indeed anybody who is willing to, says special prayers for Ladan, or thinks positively for her if they are not the praying kind.

This is more by way of experiment then necessity, Ladan has been very stable for the last few months and, as usual, has her very bright days as well as her tired days. I have noticed that, on a couple of occasions, the brighter days have coincided with several people claiming to have had Ladan in their prayers. While we are waiting to hear the doctors views on the use of another medication which, in a very small number of similar cases, has had amazing results I thought it might be nice to focus prayers on Ladan for one day with close to the same kind of intensity that she was receiving them when she first had her stroke. Those who are familiar with Ladan’s case will know that Ladan was showing good signs of consciousness until an incident in hospital, one and a half months later, knocked Ladan into an even lower state of consciousness.

If an experiment isn’t reason enough for you, then 10th April is also our fourth wedding anniversary.

On two recent occasions, the first being Ladan’s birthday on 10th February, I have been able to take Ladan back to the ground floor flat I sleep in near to the nursing home. The flat is full of items that were Ladan’s before we married and therefore hopefully a mini treasure trove of memories. Furthermore it is a quiet and comfortable place to spend time, which is also great for me. The second occasion was on the visit of a friend from the south, it seemed a much more natural place for Ladan to be receiving a guest. I am hoping that the next occasion will be this Thursday afternoon. There are several things that can happen on the day which may prevent this from happening, but that is the hope.

I have uploaded a few video clips from our wedding to my Facebook page, I will upload them elsewhere soon for those who are not on Facebook. I also hope to put up a short video in the next couple of days showing a few shots of where Ladan currently is and the flat in Heaton.

Thank you in advance for your participation on Thursday, there is no particular time and no particular prayer, just as much as you feel able and willing to offer on that day will be most appreciated.

From 17th - 24th December Ladan was in hospital again. To clarify, Ladan is usually in a nursing home with 24 hour cover by nurses qualified to a critical care level, general practitioners are on-call and usually visit within a few hours if a call is important. On this occasion, as on October 17th, Ladan was too unwell to be cared for in the nursing home and was admitted to hospital. The primary problem was again thought to be an asthma attack, possibly aggravated by a chest infection, another potential causal factor was also identified on x-rays.

For this stay we remained on Ward 43 of the Royal Victoria Infirmary in Newcastle, this ward is an extension of the admission ward and we only remained there due to a shortage of available beds on the main chest ward. The staff were friendly and Ladan was well looked after, she did not develop any of the skin problems that resulted from her last stay in the hospital. As usual, Ladan’s mother and myself made sure that one of us was with Ladan all day and all night.

Ladan’s condition was not quite as serious this time as it was on October 17th, though at times she seemed to be really struggling to breathe, which is of course very difficult to witness. On this occasion it also took a bit longer for her to show significant improvement, probably because Ladan was treated with regular oral medications rather than intravenous medications (which go directly into the blood stream). Nonetheless, she did improve and by the end of the stay we were just waiting a couple of days for a doctor to say it was okay to go. Officially Ladan has to be transported by paramedic ambulance and all ambulances were refusing to do non-emergency transport for patients on Christmas Eve, so it was only through the kind efforts of the staff on the ward that we were able to get back to the nursing home, it would probably heave been a few more days otherwise.

Ladan wasn’t particularly settled when we left hospital, she was still wheezing quite a bit, but as soon as she was back in her own room and had enjoyed a proper shower she was looking and sounding much better, and right now she is seeming back to normal again.

This is just a quick note to say that…

• Ladan is much more stable and is hopefully over her infection
• The friend that I reported to be in intensive care a few weeks ago is now at home
• My own car crash did me no harm and I have an offer of a replacement car

It has been a very crazy three or four weeks and I am still feeling a little bowled over by it all, but it looks like we are all well.

People in minimally conscious states are said to be prone to certain things, top of the list come chest infections and pressure sores, both because of a general lack of movement. Ladan has had a few suspected chest infections over the last few years but nothing major, just requiring a basic course of a regular anti-biotic and her skin has always remained in reasonably good condition, which is a credit to the nurses and carers who have been involved in her care.

On the evening of 17th October Ladan started breathing quite rapidly. In the early hours of the morning the breathing seemed to have calmed down but when I came back some hours later Ladan was being attended to by two nurses trying to help her with chest problems. The doctor was called out and she recommended that Ladan get to hospital fairly quickly. Before noon that Thursday we were in hospital.

In hospital things moved slowly. It was may hours before a doctor came to see Ladan, they decided to prescribe some anti-biotics. Ladan’s condition worsened throughout the day and she really seemed to be struggling for breath as time went on. As I have mentioned before, my presence and support for Ladan have often helped her be more settled and so I was diving in and placing myself right before her eyes, giving her lots of love and encouragement… this was incredibly traumatic for me. Only once before, in the very early days of this stage of Ladan’s life, have I seen ladan looking so terribly uncomfortable and struggling, it is a very difficult thing to witness, there was a sparkle in her eyes when I was in front of her, I knew that she knew that she could handle this, but that didn’t make it much easier to behold and inside I was yearning for the doctors to get some treatment started and to start relieving the problem for her.

Eventually we were transferred to a ward where they had no idea what Ladan’s situation was or what she required in terms of facilities or care. This initially caused an upset between the staff which is not the best welcome you can have to a ward. The nurse on duty was telling me that he was not sure he could provide Ladan with the care she needed as he also had a lot of other patients to look after. Ladan was getting worse at this point and the doctors were called to have a look at her again. Ladan got onto a more direct treatment. Because Ladan was very ill there was a lot of consultation about possibly going to intensive care. The consultation was not just about why we might need to go to intensive care, but also about whether or not we should go to intensive care. Many medical staff were apparently unhappy that a minimally conscious person should be entitled to intensive care, and the debate over whether we as a family wanted Ladan to receive any treatment, if required, was had several times in the first 24 hours of our stay. The following morning Ladan’s assigned consultant in the hospital, who has an excellent reputation for dealing with respiratory disorders and is also the head o f the Intensive Care Unit, modified the treatment regime and confirmed that, on this occasion at least, intensive care would be available for Ladan if she required it.

With the help of Ladan’s Mum, Shahla, we were able to be with Ladan 24 hours a day for the duration of Ladan’s stay in hospital, ensuring that Ladan was as comfortable as possible under the circumstances. Unfortunately the staff on the ward were very busy and the setting meant that it was not possible to always provide Ladan with some of the care she would normally receive. I got hooked up to some basic Internet access through the hospital’s Patientline service, which worked less well than a basic mobile phone would with the Internet, but it gave me some facilities (not including blogging).

Ladan became increasingly stable. She was very chesty all the time we were in hospital and there were good times and bad times. The most traumatic period was not repeated but it never felt like it was that unlikely to happen again. Toward the end of last week Ladan’s consultant started predicting that we would be able to leave on Friday as the blood test results were encouraging. On Thursday Shahla and I repositioned Ladan in her bed in the evening and I felt that Ladan’s skin was not as good as usual. This plagued me for a while, as I was starting to wonder if Ladan might be chesty because of discomfort rather than infection. On Friday morning the consultant came in and suggested that Ladan could stay in hospital over the weekend so that they could see how she did without anti-biotics. Given that Ladan is currently in a nursing home with more intensive nursing care than the hospital were able to provide I asked if it would make any difference if we went back to the nursing home and the consultant put the wheels in motion for this to happen, we returned on Friday afternoon.

The first thing we wanted to do was get a proper shower for Ladan and wash her hair, on seeing the state of Ladan’s skin I was almost shocked to tears, I have never seen skin looking so sore, thankfully that is now very much on the mend.

Over the weekend Ladan remained very chesty, Sunday was a slightly better day and Monday was a very god day where she was looking much brighter and healthier. By comparison Ladan has been a bit out of it again today but her chest does not seem too bad. It is looking very promising that this bad spell is over now, but Ladan is still coughing up slightly creamy secretions from her chest, so there is an element of caution to our optimism. Even if there is a residual infection it should hopefully just require another course of basic anti-biotics to finish the job, rather than a hospital visit, so long as it is recognised soon enough.

In the midst of this I had yet more drama of my own, though luckily not serious, in the form of a car crash, which can be read about here.

These are two quick updates because I have access to the Internet for a moment, I am in hospital most of the day where Internet access is minimal, I will write fuller updates when things are more normal with Ladan, meanwhile some updates can be found on Facebook if you are a friend of mine on there.

On Wednesday 17th October, in the evening, Ladan started breathing quite rapidly. Though she seemed a little more settled in the early hours of the morning she became worse on Thursday morning and was sent to hospital. In hospital Ladan continued to worsen for the next 20 - 24 hours before starting to settle. Heavy anti-bitoics and steroids seem to have her nearly back on track. It is not clear what the cause of the problem was. Ladan is still rather more chesty than usual but other than that seems fairly stable and may be discharged from hospital, back to the nursing home tomorrow.

At much the same time that Ladan became unwell my good friend Manoocher Samii had, according to an email I received the following morning from his wife, a very serious car accident. I was told that a vehicle overtook a lorry without realising that Manoocher was coming the other way, the driver at fault died, Manoocher rolled down a bank or hill and needed to be cut out by the fire brigade and was brought to life by the paramedics, they had thought that he would not live. He was taken to intensive care where at some point on Thursday his breathing and pulse improved and he is reported to be making an unexpectedly good recovery.

Prayers, possitive thoughts etc. would be much appreciated both for Manoocher and for Ladan.

A few weeks back Ladan started a two week course of a sleeping tablet called Zolpidem. I blogged about the fact that in a small but not insignificant number of cases Zolpidem has been found to awaken people from coma like states for the duration of its effect (around a few hours).

I have previously mentioned that there were no dramatic results from using the medication with Ladan, but that there may have been some small changes. A full update should follow in the next week or two, but this entry is to explain the delay in reporting how I feel the trial went, and to give some indication of what happened during the trial. In this blog entry I am not going to differentiate between what was observed by staff and what was observed by family members.

Zolpidem is a short acting drug, it usually starts acting within 15 to 30 minutes and stops working after a few hours. About 15 minutes after the drug was administered Ladan would typically go through a period of increased rapid eye movements for a period of around 10 - 30 seconds, with her eyes closed, and then seem generally sleepy. She remained arousable by movement or speech, but was not generally as agitated when aroused. Ladan often has quite normal reflexes which are superseded by extensive behaviour (stretching out her arms and legs) if she remains disturbed or uncomfortable for a “prolonged” period. That “prolonged” period may be a matter of seconds, but can often be avoided if you react to the non-extensive reaction and remove the stimulation, or otherwise relax Ladan, soon enough. During the course of the medication Ladan was found to be generally less extensive and her reflexes appeared to be slightly better refined. Ladan’s individual fingers were, for example, felt to react better as individual fingers when touched rather than as a collection of fingers reacting together. There were also times when people felt Ladan was more alert or aware than usual, and that her reactions to speech were more natural. Most of the the possible differences that were observed were not new, but were either more frequent or, as in the case of being more relaxed and less extensive, more prolonged.

One of the more notable facts about most of the observations referred to above is that these “differences” were being observed throughout the whole time period of the trial, that is to say they were not limited to the few hours during which the drug would typically have an impact, the “difference” was still being noticed at least 21 hours after the drug had been given. I have three possible explanations for this, firstly it is possible that some of the “differences” were seen because they were being looked for, secondly I theorize that some part of the mind was put to rest by the tablet and that this enabled better reactions when the resting effect wore off (this would require a medical opinion, which I hope to get soon), my third explanation is that I was personally present more of the time. I have previously mentioned in blog entries that there appears to be a direct link between how settled Ladan is and how much time I spend with her. Many previous times where Ladan has seemed to be more aware have also followed on from an increased presence from myself. As I was arriving to be with Ladan from an hour to an hour and a half earlier each day and not popping out as often it is likely that at least some of the improvement would be down to this, rather than the medication.

So, following the two week trial Ladan had a week of how things were previously, and now I am trying to spend extra time with Ladan for a week to see what effect that has. It has so far proved difficult to spend the extra time with Ladan, so to get a farier comparative picture this might stretch on a little beyond one week. Once I have a better idea of the difference between “Ladan with more James” and “Ladan with Zolpidem and more James” I will be writing up a report on the differences for the relevant medical staff to look at. There is a small possibility that they will feel the medication may be worth trying for a longer time period, but otherwise there are other things that have had significant results on people in conditions similar to Ladan’s which I hope to research further and, if appropriate, discuss with Ladan’s doctor.

At 9:30 this morning (British Summer Time) Ladan had her second dose of Zolpidem, this time she had the full recommended 10mg of the drug. It is now an hour and twenty minutes later and there are no uncommon observations. If anything the medication has made her more restful for a while and more reflexive when moved (this needs a fuller explanation on the different ways the body can respond to things, which I will provide another time soon).

In the 10-15% of people, in similar conditions to Ladan, who tried Zolpidem that reacted well to it, a positive reaction was usually seen after the first dose. There is at least one case where the first positive reaction was after more than a week of using the medication at 10mg/day, so hopefully we will continue for a couple of weeks to see if anything does eventually happen. There certainly don’t seem to be any negative side effects appearing from the medication.

Thank you so much to everyone who has been thinking of Ladan and praying for her through this. I really appreciate it very much indeed.

At 9:45 this morning Ladan had her first dose of Zolpidem (see last blog entry), it was a 5mg dose and the recommended dose for this use is 10mg, it is now just over an hour since that dose was given and there is no obvious effect from the drug.
The prescription written for Ladan says 5mg a day on it so now I will ask to get that changed so we can try the proper dose. The drug does not seem to have had a particularly sedative effect on Ladan either, which is its intended use in patients without impaired consciousness or brain injury.