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We still don't know what's wrong with her, at least not for certain. We are waiting on test results now that we hope will confirm the diagnosis of non-NMDA Receptor Encephalitis. In the meantime, they are treating her as if that's what she has. Victoria's story is eerily similar as others who have been diagnosed with non-NMDAR in the past. Less than four weeks ago she was well (but exhibiting some form of mania). She admitted herself to the hospital assuming a psychiatric condition and within 3 days was catatonic (couldn't speak, couldn't move). Three days after that she had problems with her heart. And within a week of being admitted to the hospital, she stopped being able to breathe or swallow on her own. She has been in the ICU ever since.
We are now in the 4th week of her hospital stay and there's only so much that the doctors can do. They have administered high doses of corticosteroids in the hopes that the steroids would reduce the swelling (a symptom of encephalitis) and bring her back to us. They are also treating her with immunoglobulin and we are also waiting for that to take effect. In a few more weeks, if she hasn't responded to the IVIg, they will start a new treatment call pheresis where they will filter her blood to clean it of the antibodies attacking the receptor cells in her brain.
Because of this autoimmune disease, Victoria is not breathing on her own - she has a machine helping her to breathe. She is also catatonic (can't speak / can't engage) and non-responsive. Once the medication takes effect, the receptor cells should regenerate and she should be able to control her body again and communicate again. We know that she is still in there. And we live with hope every day that THIS will be the day when she opens her eyes and really sees us, can communicate with us, and comes back to us. Gord has been by Victoria's side every day and at home with his kids every night.
Thanks to everyone for your positive thoughts and prayers. We continue to believe that they matter in helping Victoria fight this fight. And I know it helps Gord too.
We still don't know what's wrong with her, at least not for certain. We are waiting on test results now that we hope will confirm the diagnosis of non-NMDA Receptor Encephalitis. In the meantime, they are treating her as if that's what she has. Victoria's story is eerily similar as others who have been diagnosed with non-NMDAR in the past. Less than four weeks ago she was well (but exhibiting some form of mania). She admitted herself to the hospital assuming a psychiatric condition and within 3 days was catatonic (couldn't speak, couldn't move). Three days after that she had problems with her heart. And within a week of being admitted to the hospital, she stopped being able to breathe or swallow on her own. She has been in the ICU ever since.
We are now in the 4th week of her hospital stay and there's only so much that the doctors can do. They have administered high doses of corticosteroids in the hopes that the steroids would reduce the swelling (a symptom of encephalitis) and bring her back to us. They are also treating her with immunoglobulin and we are also waiting for that to take effect. In a few more weeks, if she hasn't responded to the IVIg, they will start a new treatment call pheresis where they will filter her blood to clean it of the antibodies attacking the receptor cells in her brain.
Because of this autoimmune disease, Victoria is not breathing on her own - she has a machine helping her to breathe. She is also catatonic (can't speak / can't engage) and non-responsive. Once the medication takes effect, the receptor cells should regenerate and she should be able to control her body again and communicate again. We know that she is still in there. And we live with hope every day that THIS will be the day when she opens her eyes and really sees us, can communicate with us, and comes back to us. Gord has been by Victoria's side every day and at home with his kids every night.
Thanks to everyone for your positive thoughts and prayers. We continue to believe that they matter in helping Victoria fight this fight. And I know it helps Gord too.