Category Archives: Diary

Latest on Ladan

It is now two weeks since the last operation that Ladan had. Doctors will tell you that families see things that others don’t see, sometimes they are things that the family pick up because they are there all the time or because the patient responds better to them, and sometimes it is because the family want to see something and so what they are witnessing is coloured by that desire. To avoid building up unjustified optimism I have tried to avoid reporting things that I am not certain, from a scientifically sound basis, have really happened. Where I have crossed this line in the past I have referred to things that Ladan “seemed” to do rather than did do. In order to give a fair picture of where we are now I feel the need to cross this line almost completely because to not do so could lead to unjustified pessimism about a lack of progress.

There is one very clear sign of improvement since May 3rd and that is in Ladan’s left eye, most people move their eyes upward when they sleep, Ladan’s left eye was not doing this, it is now. Other than that the signs are all infrequent and, what makes them harder to report as true events, they are short lived moments. Back in December successful attempts to communicate were infrequent but they would last several minutes, sometimes up to 15 minutes, so there was time to check that Ladan was understanding properly and giving appropriate responses before proceeding. When an encouraging sign lasts for less than a minute you can’t replicate it and you can’t therefore confirm it to be what it may appear to be. However, there have been a few of these short lived encouraging signs that did not appear to be there before, in some cases not for a few months and in some cases never before, and there have not really been any negative signs such as decreased awareness… a good sign of awareness that has always existed is that Ladan will often open her eyes when I say her name to her face, or will not flinch if I touch her face after telling her what I am about to do but will flinch if I touch it without announcing my intentions, or Ladan’s tendency, even if she is asleep, to show more eye movement when I am talking to her than when the room is silent… if these (and a few other) signs were to go, as they did on one occasion when a scan showed that she needed to go back to theatre, that would obviously indicate potential decline.

So, take the following with a small pinch of salt because I can’t promise you they happened, but they seemed to happen more than once in the last two weeks and they are being witnessed by those of us who have been by Ladan’s side for more than six months now so we obviously know what movement’s Ladan tends to make, such as moving her mouth around a bit before trying to swallow) that a less seasoned observer may mistake for any of these: Ladan has opened her mouth and opened it wider on request, her limbs -and most particularly her head – have been moved with increased range and control, Ladan has made mouth movements that appear to be attempts to speak, including making the shape for the word “No” in response to a question, and Ladan seems to be focussing on the people around her – or at least looking in the correct direction for them – increasingly when she seems awake.

The neurosurgical team have put in a request for another CT scan and everyone is hoping that it will show the new shunt has been working and Ladan’s ventricular system is either back down to size or on the way there.

Ladan Update

Ladan on the Isle of Wight, August 2004During January and February Ladan was, to my eyes, making some kind of progress every day. It was slow and nothing compared to how things had been going before Christmas, but we were getting blinks in response to questions and her eyes seemed to be tracking text, Ladan seemed particularly focussed on the tv when it was on in front of her, but from around the end of February the signs of progress became less frequent and things started to tail off.

The enquiries into what happened at Christmas, which are still ongoing, prompted the suggestion that we change consultant from a neurosurgeon to a neurologist who would be more appropriate for Ladan now that it was believed the surgery was all over. The new consultant and the new ward were both pleasing to us. In order to better control Ladan’s underlying vasculitis she was placed on a toxic immuno-suppressant drug and in consultation with an expert in bleeds caused by vasculitis our consultant proposed that we use an even higher dose of the drug, and higher dose steroids, to ensure that any vasculitis was completely out of Ladan’s system. This proposal carried risks as it would completely wipe out Ladan’s immune system for several months, after much discussion among the family we decided this was a risk we had to take.

While this was being discussed Ladan was being tried out on normal air rather than slightly oxygenated air, during this she started to develop an irregular breathing pattern which worsened over time. It was my feeling that the sudden change in air was causing this but the doctors felt it more likely to be either deterioration or caused by sedative drugs. They reduced the sedative drugs and called in a breathing expert. On the breathing experts recommendation a CT scan was carried out, it was a long shot but a build up of cerebral spinal fluid in the head, usually relieved by a shunt, could be causing breathing difficulties to develop.

The CT scan was taken on 24th March but the results came through on the morning of Friday 25th, there was indeed a build up of pressure. I had been thinking that I was right about the oxygen because Ladan had been back on it for a week and her breathing had improved, but certainly this build up of pressure was likely to hinder Ladan and it needed to be sorted out. In the early hours of Saturday morning Ladan’s family sat around in the visitors room while her shunt was checked and, having been found to be blocked at both ends, replaced.

Every weekend thereafter, until the end of April, Ladan was back in theatre. The new shunts would either be found to be blocked or infected and therefore needed replacing with another shunt or sometimes with an external ventricular drain as a temporary measure while they treated infection. On the penultimate weekend of April Ladan had to go to theatre twice as the external drain they had inserted was found to be dislodged and causing a further build up of pressure. Finally on 3rd May, having finally spared us from late night weekend surgery (and it was always late night) her external drain was again replaced with a shunt and we are again waiting to see if this one is working for Ladan.. Ladan has faced brain surgery 8 times in less than 8 weeks, there is a little concern that even if the shunt is working Ladan’s head may not return to how it looked before February, but the coming days and weeks, if the shunt is working, will tell.

Any considerable build up of pressure in Ladan’s head, and any infection that she may have also had in her head, could in themselves reduce her conscious level, let alone provide a major hurdle to recovery. With all of this going on the plans to intensify Ladan’s immuno-suppressive therapy and other plans of moving her to a slow-stream rehabilitation centre have been put on hold.

During this difficult period Ladan has occasionally shown very encouraging signs, she has convincingly tracked with her eyes and on occasion seemed to obey commands, but these have been infrequent events. I am hoping that a successful resolution to all the shunt problems will put us back on the course we seemed to be on a couple of months ago, failing that hopes turn to the more vigorous immuno-suppressive therapy which is still on the horizon.

Ladan’s Progress

Firstly, thank you to all of you who have sent messages of support and said prayers for my dear wife Ladan. This update is just to let you know the latest on her situation.

Until a few weeks ago Ladan was showing some very encouraging signs, she was looking around and focusing on people and text. A few days before Christmas her mother and grandmother were communicating with her, getting yes and no answers from the nodding and shaking of her head, and having smiles in response to promises of the meals that would be cooked for her when she was out of hospital. While this was encouraging Ladan was still experiencing moments of high heart rate and blood pressure, often accampanied by high fever, which were generally kept calm by administering a certain drug.

On Christmas Eve Ladan was getting very agitated and her heart rate and blood pressure again started to rise, the nurse was ordered, for no reason that we are aware of or were consulted on, by the doctors on duty not to administer the drug that calms her down and she developed an increasingly high fever. In the early hours of Christmas Day Ladan started having violent seizures (fits), these remained violent for about two and a half hours and continued at a lower level until midnight (nearly 24 hours). It is unusual to suddenly develop seizure activity 7 weeks after a bleed in the brain and so a CT scan was taken to see if there was any new damage or bleeding to explain the activity. We were told that the scan had shown no bleeds or other damage that could explain the activity.

Immediately following this Ladan has taken a major step backwards in terms of clinical responses. The seizures sent her back into a much deeper coma and a subsequent EEG (scan of electrical activity of the brain) showed very little activity. We have officially complained about the actions taken that night and that complaint is still being dealt with.

A few days ago we had a meeting with a consultant in which we were informed that the CT Scan taken early on Christmas morning shows that Ladan suffered another bleed in her cerebellum, though probably not of sufficient size to warrant an operation. It is believed that the underlying condition ( the vascular disease Churg-Strauss) which caused the first bleeds is well under control and it was conceded that the high blood pressure that was allowed to get out of control that night may have been the cause of this new bleed. On Friday an MRI scan was taken which confirms that the effects of the newer bleed are lessening but also shows some swelling around the all outer ridges of the brain, the radiologist who took the scan said that this pattern can be consistent with having had seizure activity.

As yet we have had no explanation or apology for what happened on Christmas Eve, but what is most important and most encouraging is that Ladan is showing continued signs of recovery from this new low point. Ladan is again responding to pain and more recently opening her eyes, though with less movement than before, and has moments, with increasing frequency, of seeming to understand what is said to her by way of trying to open eyes on request or a change of expression or breathing according to the subject being spoken about.

Below are some links to popular prayers which I recommend for use either fore Ladan or for other loved ones in need:

Link: Baha’i Short Healing Prayer

Link: Baha’i healing prayer for women

Link: Baha’i Long Healing Prayer

I also often find myself saying marriage prayers for Ladan and I as a prayer for a healthy and fruitful marriage in this world encompass the hope that Ladan should make a full recovery in order that we may go on to have children and a united future.

Link: A Baha’i marriage prayer

Ladan is a very sweet soul who has never really done anything wrong in her life, we can only hope that there may be a wisdom to this suffering she is undergoing and that her bright personality will be polished by it to shine even more radiantly than before.

Many thanks, James.

Ladan Latest

It is a turbulent time for myself and the rest of Ladan’s family. Ladan is currently having periods of very high temperature (39-42 degrees), extremes of blood pressure (systollic rates of up to 230 and down to 70) and high heart rates (up to 190) and sometimes these conditions are existing for long periods of time, such as 4 or 5 hours, with a long period of still high temperature and low blood pressure either side. These periods are often accompanied or preceded by shaking or extreme muscle tension. Ladan is currently in the High Dependency Unit but she has been on a ward for a week and also paid another visit to Intensive Care for just under 24 hours since my last blog update.

Just before this all started happening Ladan was seeming much more responsive and alert. Coming out of a coma is said to be a gradual process more often than a sudden moment and Ladan’s moments of apparent consciousness has her seeming much more present. I am hoping that the last few days, the cause for which is unknown, will pass and allow Ladan to carry on this encouraging recovery.

Tomorrow Ladan is due to have an MRI scan to assess the current state of damage to her brain. This may give some clues as to what has been happening and how good her chances for recovery are looking on paper.

Latest on Ladan

Ladan & I on the morning of our wedding, April 10th 2004

Ladan is now in the High Dependency Unit at the Newcastle General Hospital showing some signs of response through her eyes and left hand but is not yet conscious. Her condition is still very serious but the doctors are becoming more optimistic in their tone about the possibility of Ladan making some kind of recovery.

About 6 weeks ago Ladan started having severe stomach pains accompanied by typical signs of upset stomach, she did not keep her food down for several weeks and we traveled up to Newcastle for a break thinking it may be stress related, after a few more days of no improvement she was admitted to hospital where she was kept under watch when one week later (two weeks ago today) she had sudden severe head pain in the morning accompanied by numbness in her face and arms, slurred speech and blurred vision. Doctors assured us that this was a very bad migraine headache until the afternoon when they started becoming concerned it may be something more and set up an MRI scan for her. She spent an hour in the MRI room with more doctors and big books entering the room as we waited, finally she came out and smiled very sweetly as I shared a joke with her and she told me the headphones hadn’t been working in the scan room, then, luckily before the consultants eyes, she fell unconcsious. Having seen the scans they were already aware that this cold be a severe bleed and they treated it as such, following surgery later that night we were informed that she was still alive but only just and the best case scenario was that she would live with severe brain damage for the rest of her life. From that time to now she has been unconscious, initially in intensive care and now in the high dependency unit, she has also developed a chest infection and some bowel problems which it has been suggested may also be life-threatening but there is no clear diagnosis on that yet.

Science can keep people alive and Ladan has regained most of her breathing control for herself and is increasingly stable, the initial cause of the bleeding has been diagnosed as churg-strauss disease and can be kept under control with steroids, she will probably feel much better than she has done for a while if or when (as I believe) she makes a full recovery. Beyond supporting life functions and providing medicines the rest of the healing process is left to the human body itself. If there is damage to the brain it may heal as she is young, the extent of any damage will only become obvious if/when she regains consciousness.

I am a great believer in prayer, I have used it many times in my life and am embarrassed at how trivial some of my uses have been, but I know it works. Any prayers that are said for Ladan are most warmly appreciated, I feel moved and strengthened by the extent of support being offered to Ladan from people of all religions from all over the world, as well as the use of some alternative healing techniques that send possitive energy in her direction. Ladan has been fighting a tough battle and is surviving, all the strength you can offer her through prayers is a bonus I truly appreciate and thank you for.

Bumper to Bumper on the M1

This evening I drove down to Tunbridge Wells from Newcastle and made excellent time. The roads weren’t quiet as such but they were moving very well. When you take a drive of over 300 miles it is inevitable that you will see some dangerous driving along the way, lately it seems very common to find two cars involved in a high speed road rage showdown on the M1, driving bumper to bumper not because of slow traffic but in a tit-for-tat battle between two angry drivers who keep undertaking and cutting in front of each other at speeds of between 90 and 110mph. It is insane, not only do such drivers put themselves at risk through such frivolous driving but they put all other road drivers at risk too, just because they can’t let it go when another driver acts irresponsibly. If a bad driver isn’t going to be reported to the police then it is best to put as much distance between you and them as possible, rather than letting him or her provoke us into being bad drivers too.

Of course these men and woman with their fast cars do benefit from high response breaking systems as well as incredible acceleration, the equally fooolish are those who drive in standard cars and abide by the speed limit but still drive very close to the tail of the car in front. Again, this endangers the passengers in that car, the car in front, and several surrounding cars on the road. If it were possible I would favour removing speed restrictions on motorways in exchange for enforcement of the 3 second distance rule being sctrictly enforced by technology and heavy fines. Today I saw a couple cruising happily just as metre or two behind a large truck, they would not have been able to see what was in front of it, they would probably not have survived if the truck was brought to a sudden halt, and the truck driver wwould probably not have known there was a car so closely tucked behind his truck. Speed may make accidents worse but accidents are caused by careless driving, you’re not driving safely just because you are sticking to the speed limit. The three second rule involes counting three seconds (try “one elephant, two elephant, three elephant “at a moderate pace) from when the car in front passes a particular point and ensuring that you do not pass that same point before the three seconds are counted.

I’ll be on the road again tomorrow, same journey in the opposite direction. My wife has been admitted to hospital in Newcastle because nobody has been able to work out what is causing her intense stomach pains and vomitting… no, she isn’t pregnant. Nobody thinks it is too serious but after two and a half weeks she has barely kept any food down, the doctors best guess at the moment is that the underlying cause is a parasite picked up on our honeymoon in Egypt, but we’ll know more as the tests take place. I’ve come back briefly to grab some things and save the fish from starving.

Bodiam Castle

Today Manoocher Samii came to visit for the afternoon, the sun managed to start shining through the clouds so we headed out to find a nice place for a walk… I got a bit lost driving through Tunbridge Wells and found myself miles from where I had intended to be, so we ended up visiting Bodiam Castle.

Built in 1385, most of the interior of the castle has been destroyed but the exterior shell is still largely in tact and enough remains of the rooms and spiral staircases to make it a fun and throught provoking visit. Today it was quite quiet and thus very peaceful. Although Bodiam was built as a defensive castle it was also used as a home and is beautifully surrounded by not only a complete moat but also many hills. It was a slightly rushed but certainly pleasant use of thirty minutes.

Clicking on the photo above will lead you to more photos taken on our visit to the castle, or for more information you can visit the castle’s page on the National Trust’s website.