During 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.