Welcome to Ellie's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Quick note from Rachel:
Carissa will be writing down Ellie's full story in the days to come, but I'll give you a short version here to catch up anyone. Starting on December 15th some symptoms began to come together for Ellie that added up to an official diagnosis on Sunday 12/26 of Anti-NMDA receptor encephalitis. You can read more about this rare disease via this wikipedia link (https://en.m.wikipedia.org/wiki/Anti-NMDA_receptor_encephalitis
) or read the book "Brain on Fire" by Susannah Cahalan, a women who experience the same disease in her early 20's. Suffice it to say that she is a very, very, very sick little girl.
Between those two dates, there was a first seizure at a local hospital, an ambulance ride and transfer to another hospital to be seen by an on staff pediatrician. After a normal EEG and bloodwork, he sent them on their merry way DESPITE Carissa and Ryan's wishes for further testing because they KNEW that something was very, very wrong. Thank God for intuition, because they made the drive all the way to Minneapolis to the nearest children's hospital to be seen by a pediatric neurologist as soon as they were discharged on the 16th. One insanely long night in the ER there, Ellie was finely admitted and began a massive rigmarole of testing, including another EEG (which, finally came back NOT normal), MRI, endless bloodwork, and a lumbar puncture (spinal tap).During this whole ordeal, Ellie was very lethargic and unresponsive, barely eating (an apple, maybe). When those results came back, the doctor knew there were a few things at work, most likely meningitis and something autoimmune, but nothing was definite.
In the next few days, Ellie was put on anti-fungals, antibiotics, Tylenol and Motrin to combat possible infection, fever, and pain, and a steroid. There were few, rare glimpses of "normal" Ellie that was all know and love and by Sunday 12/19, thought everything was moving in the right direction, despite what Carissa describes as "rabid" behavior, which was attributed to the steroid.
Then on 12/21, Tuesday, things took a turn for the worse. Ellie was in a daze throughout the day, not focusing on anything, which the doctors thought might be ongoing mini seizures, but after 24+ hours on the EEG, found it wasn't. They then started immunoglobulin therapy (IVIG, which turned out to be exactly what she would eventually need to treat the disease). In addition, Ellie was moved to the PICU for an overnight EEG, another MRI, and added another member to their team--infectious disease specialist. There, they started doxycycline, a super powerful antibiotic to treat the mycoplasma they found in her bloodwork.
Over the next few days, Ellie slipped further away, even being unable to eat or swallow, and had a feeding tube put in. She was congested, and there was round the clock care making sure her airway was clear and suctioning her spit and snot. There were a lot of involuntary movements, like kicking legs rhythmically, fingers playing the piano, and locking the jaw, looking like she was chewing, etc.
Thank God for small miracles, on Christmas Day, Ellie was consistently able to cough and clear her airway and making more purposeful movements, and got moved back to the 6th floor and our of the PICU, and got her official diagnosis on the next Day, December 26th. All further day to day updates and prayer requests will be in the journal portion of this caring bridge site. I know this was a bit of boring facts only sort of tale, but I wanted Carissa to be able to tell her own story and infuse it with life the way only a mother can.
Please storm the heavens for Ellie, and Carissa, Ryan, and the girls. May we never underestimate the power of prayer and the greatness of God.
Carissa's Story (in progress):
Wednesday, December 15th began a journey that I had never anticipated. We had driven to Minnesota and gotten to my cousin Lisa's house on Tuesday afternoon, which gave me time to go in and see my grandma Malone twice that day.
Ellie had been extra sleepy and whining a few days before we left, so I thought maybe she was coming down with a cold or something....but it made packing difficult because she wasn't super happy if I wasn't holding her.
**other things that were weird, that I blew off as her being a typical 3 yr old, being fussy about food, asking for food then seeming like I gave her something she had never seen or didnt ask for, saying the back of her neck hurt, especially when I changed her clothes. It wasn't until I started reading the book, "Brain on fire," that one of her doctors told me about, that I knew these things were related.**
Wednesday morning she woke up at 8:30 and played, then fell asleep on my lap for an hour, got up for a few minutes, then fell asleep again for another hour. When she woke up, she had to go to the bathroom and I was later than I planned on getting in to see my Grandma. I took her to the bathroom and she wanted to be left alone to do her business. I went in several times to see if she was done and she didn't answer, which is pretty normal when she is busy doing a job. After waiting a while, I told Ryan that I needed to go in to see my grandma and asked him to keep an eye on her. My cousin Lisa's house is laid out in a way that if we left the bathroom door open, the kids that were playing upstairs could see her and people in the dining room could see her. After I left, Keela checked on her, but Ellie didn't talk to her, so Ryan told her to leave her alone and that he would come up and take care of her. So Keela came downstairs to eat and Ryan went up to see her, in the meantime Ellie made it to the bathroom doorway....and must have it the "corner" of her forehead on the bathroom vanity on her way out. ....at this point it was not noticeable and no one knew it had happened. (we later determined she must have tried to walk while having a seizure and lost her balance) Ryan helped her wash her hands, but she seemed very off balance and didn't respond when he talked to her. So her carried her downstairs and was trying to have her eat some lunch, but he noticed she was staring up and then tried to open her mouth and her jaw was locked.