More Complications

Unfortunately Emma has suffered another huge set-back. Throughout the entire coma she has had several events in which she reacted differently or presented different symptoms than the usual (textbook) responses. She had been doing great, she was extubated and moved to a recovery room and had been awake for 4 days (and literally awake as she only slept for around 6 hours in patches of 10-20 mins). She was drinking and eating OK after this initially being very difficult. She was anxious and restless most of the time, so we needed to reassure her that everything was fine. However, unfortunately Emma had 2 seizures in her recovery room so she was moved back to ICU for closer observation. When she had more seizures in ICU only 10 hours later (whilst being on anti-seizure meds) they only had one option and that was to re-intubate and sedate her again to keep the seizures under control. Following the seizures she had a very high fever for almost 15 hours. The fever could be caused by seizures or by an infection. Investigations have been extensive including an MRI scan which clearly showed lesions in the white matter of her brain from an inflammatory process. The diagnosis is Acute Demyelinating Encephalomyelitis (ADEM). This is an extremely rare process (so rare that the Neurologist has only seen it a couple of times in this extensive career) which can happen 3-4 weeks following sepsis (which Emma had on Day 2 of the coma). The treatment for ADEM is a 5 day course of massive doses of steroids which they started this morning. In Emma's case, ADEM is an inflammation which has caused damage to the signal pathways in her brain. The negative side of using steroids is that it suppresses the immune system making it harder to fight infections so last night Emma underwent a 4 hour laproscopic abdominal surgery to make sure that there was no residual infection from the previous surgery. They removed some fluid that was not obviously infected but may still have been a source of infection, it is being cultured now, and early indications are that it is negative . Fortunately the ADEM process in the brain was found very soon after it began (within 3-4 days) and so the Doctors have given Emma a high chance of success. Emma now has had a tracheotomy and will remain sedated for a period of 7 - 10 days after which she will have another MRI and be woken when the Doctor's feel it's appropriate.

As you can imagine we are very upset by this turn of events but continue to hope and pray that Emma will again show her resiliency and come out on top!