Wednesday, October 13, 2010

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!


  1. Stay strong guys, we are sure Emma's luck is about to change for the better. We are hoping and praying for her situation to improve. Trying times are times for trying.

  2. Dear Emma, Nikki & Julian,

    We are praying for Emma, for the both of you, and for your family back home.
    As you know, Jessica and I have been here in Monterrey for a year now.
    During this time we have come to realize that in all things, God is Always there.
    During this past year, there have been many ups and downs, many bad times.....but --- thru it all we can now see - God turned around those bad events and made something good ultimately happen - although at the time, we couldn't see that!
    Emma, just like Jessica, and just like all the patients with RSD that come here for the coma, is a "fighter" - She will be victorious, she just may have to "stay in the ring" alittle bit longer! Remember - these RSD patients suffer with a pain that is unbearable and unimaginable -- something that we really can't know because we ourselves have never felt it! She has made it this far --- she will make it farther --- and with God's love, Dr. Cantu's wisdom, and all the prayers being said on her behalf -- she will get better --- I have seen this with my own daughter Jessica!!! So, hang in there - be strong - and please let us know if there is Anything you need?
    In God's love, always,
    Que Dios Te Bendiga
    Sarah & Jessica

  3. Dear Julian, Nikki and Emma

    Mine and Ellena`s love and deep thoughts are with you, hang in there Emma - kia kaha

  4. bumps... who needs them aye! she's a strong fighter, though, and so are you all. You can do this and Emma will, too. Be strong, stay strong. Close your eyes, breath in and feel the warmth of the blanket of love, courage and strength being wrapped around you all, those at home as well. My love to you all xx

  5. Hi Julian,Nikki and Emma... we have been thinking and praying for you everyday. We hope things are picking up for you all. Noah has been particularly interested in how Emma is. He to comfort that he started Chemo on the same day that Emma started her treatment. Keep strong Lots of love Dennis, BArb, Sam & Noah

  6. Hey Julian and family. Sorry to hear things have been bumpy!! Very sucky-moto. Sounds like you guys are doing your best to be super positive. Hang in there and stay strong. The NIWA Hamilton crowd are thinking of you! Wishes for strength for Emma and you. Nicole.