FANTASTIC NEWS!

Well it has been quite a while since the last update and that is because Emma has needed us to be on hand 24 by 7 but each day she has improved greatly.

She was discharged from the ICU and has been back on the 8th floor for a couple of days!!!! YAY HUGE EXCITEMENT!!!! She has continued to improve daily and is well on her path to recovery since waking a week ago. Her infections are under control, she is still on antibiotics but hasn't had a fever for a few days, and the markers in her blood, e.g; white blood cell count, are much better and near normal. Em's lungs have improved greatly, she is off the ventilator and after a couple of days on a T-tube that gives oxygen & humidity, she is now fully breathing on her own. She is being slowly weaned from the final sedation medication she has had for the last 5 weeks, so this has been happening slowly and will continue for a few more days. Emma has developed a high tolerance for the sedation medication and in the past week has been on a level of sedation that would send the "average" person into coma, but Emma is very much awake and alert with the current level. This was anticipated and is the usual case in RSD patients as they need a much higher level of sedation to send them to sleep and keep them asleep - all to do with how these patients develop an amazing inner strength to cope with their unrelenting & severe level of pain! So even though Emma is being weaned very slowly from the drugs, she is still having drug withdrawal episodes but as the days go bye she is handling these much better.

Emma has continued to have neurological tests; yesterday she had her 2nd MRI, her 4th EEG is scheduled for this weekend, and she has had an optical nerve test. Every EEG gets better than the last one and they are now showing no seizure activity and the optical nerve test showed normal vision. Emma's 2nd MRI (15 days after first MRI) surprised the Doctors (and us) as they were expecting very similar images to the first, either the same, slightly better or slightly worse, but the images are now FANTASTIC!!! They show that 95% of Emma's brain lesions from 15 days ago are gone - all healed! For a minority of patients, they may take many months, years or never make a full or good recovery, so thankfully Emma is one of the lucky ones and the disease was diagnosed very quickly and she responded well to the intensive steroid treatment. She is communicating and moving normally, has a good memory and there is no sign of any impairment. She has been spending a lot of time listening to music and today enjoyed watching a cartoon video. Tomorrow she may spend some time sitting in a lazy boy chair, but weight-bearing is still some days away.

After such a lengthy ordeal, we are so relieved and grateful to the many wonderful Doctors here that have enabled us to have our old Emma back with us again!

Update

The 5 day steroid treatment for ADEM went without a hitch. (1 gram of methylprednisolone per day) Emma was well sedated, had no fever, and hardly moved a muscle for the 5 days. The surgeon is very pleased with her progress and her stomach and small intestine function improved so that by yesterday she was being feed entirely via nasal tube to the stomach. Yesterday they began reducing the sedatives and soon she began to wake. Like the last times she had plenty of energy and it was difficult to keep her calm and still in bed and to not have her trying to pull tubes and equipment. The waking was slightly different because of the tracheostomy tube which allowed some sedatives to still be used - the neurologist wanted the waking to be very slow. The latest EEG's show no sign of seizure activity and Emma has become more and more awake over the last 2 days. Unfortunately the steroids strongly suppress the immune system and last night she had fever again. There are a few possible infection sources and broad spectrum antibiotics have been started while they wait for the lab to identify specific cultures. So far the signs regarding the ADEM are very positive, she can follow commands, move all limbs and see well and she has improved each day as the sedatives have been reduced. She has no trouble remembering her situation, her friends and family and even some events from the last waking. The trac tube means she can not talk so communication is reduced to facial expressions and hand squeezing. One of the possible infections is in her bronchial tubes so breathing is still difficult but she is controlling the ventilator herself and producing about 60% of the energy for each breath.

Thank you all so much for your great support.

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!

Emma wakes (again)

Best news in many days!
We are so relieved that almost 48 hours ago Emma was woken and extubated. Since then everything is going as expected for the end of a ketamine coma. She has a lot of difficulty breathing due to the pneumonia and the soreness in the throat but the breathing is improving. She is experiencing quite a few ketamine hallucinations, is very active and has not slept a wink since waking. She is beginning to eat and drink a little and most of the medications have been removed.

Day 19

Emma is still sedated and is very stable but still has persistent fever (though manageable). She is healing well from the surgery and the feeding direct to the blood stream has been removed because she is now getting all that she needs via the stomach. The Dr's have been trying to find the infection source and so Emma had a 3rd CAT scan a few days ago which gave them much more detail and showed the abdomen was looking good. The scan and X-rays have also been showing a fluid build-up and pneumonia on her lungs. Last night the fluid was drained and today she is breathing a lot easier. She is now following a protocol to try and wean her from the ventilator. If she is strong enough by tomorrow then they will extubate again but if she is not then the time has come for a tracheostomy (as the breathing tube has been in for long enough). Her central catheter is being changed today as well. This is the second change of central catheter as these are also potential infection sources.

We are heartened by the improvements we have seen today and pray that those improvements continue.

another bump in the road

Poor Emma spent a very difficult 15 hours awake and off the ventilator yesterday but fluid on her lungs meant that she progressively was not able to get enough air. Unfortunately it was necessary to sedate her and put her back onto ventilation. Since being back on the ventilator her lung X-ray is much clearer already. Medication and a Bronchoscopy (camera & suction) today will be used to clear her lungs even more. When they extubate her again she will not have had ketamine for some time and so they will be able to perform much more thorough tests to make sure she will be able to breathe OK on her own. Emma was very strong yesterday while awake and we know she will continue to fight hard to come through this ordeal.