My daughter's battles

By Rachel, Acute necrotizing encephalopathy of childhood, Canada, August 8, 2019

Spring came early in 2009, our then 3-year-old daughter is an avid puddle jumper and my 9-month-old son has an ear infection. I am sleep deprived; my husband and daughter decides that it’s the perfect weather to go puddle hunting and jumping.  A few days later, we rushed our 3-year-old little girl to the hospital in Fergus, our heart heavy as we knew something was wrong, the triage nurse was ready to send us home but I knew something was wrong but they would only keep us under observations. At 8am, our little girl goes into seizure and they are not able to stop them. She is then stripped and intubated, this memory will always remain with as this exposed the vulnerability of our daughter. This was a necessity for our daughter safety as they were transporting him to the McMaster’s Children’s Hospital and they couldn’t risk our daughter going into respiratory arrest. Over the next few days, the doctors were baffle at our daughter’s condition meeting with specialist from around the world to determine was the cause of her reaction to Influenza B commonly known as the flu. In Canada, the active influenza season generally starts in November and ends in March. The number of hospitalizations and deaths associated with influenza are used to measure the severity of the influenza seasons. It’s never clear the amount of hospitalizations and pediatric death when it comes to the flu, the number ranges widely from one year to the next from 700 to 1000 hospitalization to 7 to 20 pediatric death however this information is only as reliable as what is reported to Health Canada.  Don’t ever let anyone tell you, it’s just the flu, this is a mutative virus that even scientists are currently unable to stop. The flu vaccination; good hand washing and proper social consideration are you best defense against it.

 

We were first greeted by a social worker on the pediatric intensive care unit (PICU). Our first reaction was this can’t be good maybe we watch too many episodes of Law & Order however in Canada, it is common practice during an acute crisis, that a family is assigned a social worker and this is to ensure that the hospital’s and the families’ need are met. Now remember our son is also sick and because of this, he is banned from entered PICU. My husband and I take turn to be at our daughter’s side. My sister and my brother in-law and his wife take turns to be with our son and be with us will we meet with doctors.

The doctor cannot predict at this if she will have any disabilities and/or if she will recover fully. The next 6-8 weeks will be the ones that will tell us what happening. We have started some physiotherapy and working with another therapist to keep her mind active because through all of this our little girl is very aware of what’s going on.”

I remember being devastated when I saw this MRI, I remember the young doctor smiling when giving us this news using lesions and inflammations interchangeably and not explaining to us that in the medical world that this meant the same thing. I also remember the occupational therapist and the physiotherapist being in the same room and talking me through this process as you can imagine the full MommaBear emerged at this news as it seemed by the doctors’ words that my daughter’s life would not progress very much further as you can have realized this was all clarified before the communication went out.  Now the occupational therapist is a good friend of our family, although we don’t get to see her much as we’d like to but we do keep in contact. At first, it was thought that Arden was not aware until I was visiting with her and she was tracking me. She was paralyzed for over a week and as she slowly but progressively got better, Doctors still couldn’t give a prognosis on Arden’s condition.

You will hear from parents of children with special needs just how special these siblings are and this starts at a very young age whether they know it or not. As Arden struggled to roll over and got frustrated, her brother would climb in her bed and climb on top of her then the giggles would start first by Xavier and to our delight, Arden would laugh also. How lucky were we to be able to hear our daughter’s first laughter for the second time in our life? This all because a little boy simply wanted to play with his sister both of whom had no words to communicate but managed through smiles and giggles. Arden has loved her brother from the minute that she was aware that he would be born. 

On March 26, after a full day of rest Arden showed dramatic improvement.  She started saying “hi’ and “yeah”. She was full of smiles. We did her swallowing test and we will be able to give her some puree food. Eating is a crucial step in being able to develop verbal skills. Different food and texture helps challenge and develop different oral muscles.

April 15, we get to come home for the weekend. At this point, the kids and myself have not been home since that night on March 10th. Our cats are ecstatic to see us. They greet us at the door and won’t leave our side, they rub themselves all over Arden, even though she can sit, she cannot really get away from them at this point. She wouldn’t want to get away from them anyways, she so happy to be home, in her things, with her animals and her families.

Come Monday, we are resettling at Holland Bloorview Rehabilitation Centre for the next while to get Arden, the best therapy available. Holland Bloorview Kids Rehabilitation Hospital is Canada’s largest children’s rehabilitation hospital focused on improving the lives of kids with disabilities. For the next 18 weeks, we are focused on hourly therapy for Arden which includes physiotherapy, occupational therapy, speech therapy, and recreational therapy. Arden re-learned to sit, talk, walk, eat, crawl, write, smile, laugh. Her motor skills were non-existent on those first few weeks. We all know how precious those first steps are when are children are little and you don’t realize how much for granted to take it until it’s lost. We celebrated every milestone has Arden reach them and her little brother, Xavier who was following closely ahead or behind at the time. Arden’s a determined little girl.

On May 11, we send out this information to our friends and family:

“Hi Everyone,

Just thought that I’d let you guys know about the progress that Arden in the past three weeks. Arden is now speaking clearly although it takes time for her to formulate what she wants to say. She is talking to me in full sentence and a few words to everyone else. Her speech therapist is now readjusting what they are doing with her.

She is crawling, she went through a tunnel this weekend at home. She still slouching when she sits but her protective reflect are there to help her from falling over. At this point, she still has tone on her right side especially her right foot. Her heel is not coming down. They are talking about maybe doing Botox and putting a splint on her to help along. I guess I will know more about this week. I can bend her right foot upward when she is sleeping (easier she doesn’t fight). So, I still have some reservation about Botox injections.”

I remember crying when they did the Botox injection, even though I understood what we were trying to do and did successfully. I wasn’t keen on having a Botulinum toxin injected in her body. We went through serial casting and Arden progressed well by the end of June, we were in a lock down on getting her to use her walker. Once she passed the initial stage, she was walking everywhere.

We went on to have another small episode in Aug of 2010 and did a few days at CHEO in Ottawa.

Family Day 2013, we had a major relapse with a journey similar to the above however Arden now has necrosis on her cerebellum and her brain is no longer able to coordinate her being able to walk…….

Isn’t amazing how one little person, can go through so much, be so resilient and be so sociable?

More information on Acute Necrotizing Encephalopathy at: www.aneinternational.org

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