Thursday, October 28, 2010


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!


  1. That's amazing. So relieved to hear =] thanks so much for all the updates, nerve wracking ones and all can't wait to see you all again

  2. oh wow that is fantastic news and such a relief for all of us, too. All my love going out to you all, as usual. ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥

  3. That is amazing and wonderful news - has her pain gone ?

    Well done all of you for your strength and love.
    Marcia and Ellena

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  5. Praise God! I am so happy to read this update! :) This has made my day!

    Emma, I think of you and pray for you all the time. I know that you are fighting strong and with God, your parents and Dr. Cantu by your side, you will make it through this!

    I can't wait for the day we can meet and give each other a big hug and share our Ketamine Coma "battle" stories. Gosh, between the two of us, we have really given poor Dr. Cantu a run for his money! What would we do without him? He is truly amazing.

    Keep up the good work! We are so proud of you!

    If you guys need anything- just call us!

    Love always,
    Jessica Stevens

  6. That's absolutely fantastic! And good that she has started eating solids! My thoughts are with you all every day. I downloaded Emma's songs off youtube and so it feels like I'm with her. I miss you all so much. Emma is such a fighter, she can handle anything! You're amazing babe. Keep getting better =). Love you xoxox <3

  7. Emma, Nikki, & Julian,

    Hello, this is Suzie Hyatt, one of the coma patients. Emma, so glad you are finally back on the 8th floor. I had the pleasure of meeting both of your parents last month while in Mexico. Unfortunately, you were sleeping the whole time I was there. I have been following your story and look forward to the updates. You and your family are in our prayers. I hope you are able to enjoy the nice leather recliner. It's much better than the hospital bed. Take care, sending lots of hugs.

    Suzie Hyatt & family