Tag Archives: hospital

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 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.