Ryles?…could you smile for me again? Hmmmm…that is odd

Okay, this had to be one of the weirdest days yet. Ryleigh had a very tiring day. She woke up very dizzy and not able to move around, slept a lot, and then proceeded to start talking a little strangely.
The thought that the dizziness and tiredness was because of her being severely dehydrated as she is as -714 for fluid loss versus intake! Yikes….but around 7 pm this evening I noticed something very strange:

I showed the nurse her picture from a few days ago with her big, bright smile when she had her hair done:


But today something different:


So first her GI resident is called in. He does an assessment but he works with guts not brains and nerves….so he pages for her regular GI doctor. He comes in and I jokingly say…”Wait a minute, you are 12 hours ahead, don’t you usually come in the morning not the evening?”
He responds, “They needed the lead guy on this!”
Oh boy, that can’t be good.
He examines her, I show the two pictures, and he says you probably want to show those pictures to neurology. WHAT???? He said Ryleigh is an interesting case (by the way he reminded Ryleigh that is better to be boring than interesting in a hospital). Hour later in comes the neurology resident.

Ryleigh is assessed again, she speaks funny, a bit of a lisp, difficulty chewing, cannot drink through a straw, and of course has difficulty forming her lovely smile.

The neurology resident leaves to consult the attending neurologist. Tic-toc-tic-toc Hey wait a minute it is 10:30 no one would be doing laundry now…rush down and put a load of laundry in.. Rush back and the resident is there ready to share his findings…

They think she has Bell’s Palsy.

Bell’s palsy is a temporary weakness or paralysis of the muscles on one side of the face. These muscles are controlled by the facial nerve. Because there’s a facial nerve on each side of a person’s face, and Bell’s palsy usually affects just one nerve, people with Bell’s palsy will most likely notice stiffness or weakness on one side of the face.

When the facial nerve is working properly, it carries a host of messages from the brain to the face. These messages may tell an eyelid to close, one side of the mouth to smile or frown, or salivary glands to make spit. Facial nerves also help our bodies make tears and taste favorite foods.

But if the nerve swells and is compressed, as happens with Bell’s palsy, these messages don’t get sent correctly. The result is weakness or temporary paralysis of the muscles on one side of the face.

But they are not sure why and how come this showed up now. Theoretically if she had it, it should have been treated by the steroids she is already taking. So more tests:

Blood tests to see if she has a virus that may of caused this (they think that is the most likely suspect). If they know the type of virus they can possibly treat (although they are treating all ready with an anti-viral and the steroids). The palsy can last for 10 days to weeks. They say kids recover faster than adults but it is not very common in kids.

MRI of her brain and brain stem to rule out something more sinister. Yay, that is reassuring!

It will take some time to identify a possible reason. Meanwhile she is in isolation and may not be able to attend the Science Fair session tomorrow. She is very disappointed. She is also needed to be monitored every 2 hours just in case things escalate… but mom don’t worry just ignore us and sleep through it. Who are they kidding, my head is spinning and my heart hurts for Ryles…sleep seems a far way away.

She is so amazing and I am not sure why she hasn’t had a major melt down about how unfair this all is. Yesterday we were looking at her possibly being an outpatient but now she is back on an IV and we are not sure how much longer we are here.

I look forward her big, bright smile once this passes.

Oh, Oh, I just remembered I still have laundry in the washer. Good thing it is open 24 hours…I knew I wasn’t going to sleep much.

3 responses to “Ryles?…could you smile for me again? Hmmmm…that is odd”

  1. Oh dear! Appreciate the updates! Honoured to share in this difficult time with you guys. Reading every update and sharing your burden in my heart. Praying!! (And just realized I’m probably making you cringe by leaving out my personal pronouns.)

  2. Michelle Miller-Gauthier Avatar
    Michelle Miller-Gauthier

    Hugs Jo, Ryleigh & Chloe. I think you all deserve a break with some good news. I have a hard time reading this and I can’t imagine how you are all coping. Your smiley spirits were an inspiration this weekend, even if you didn’t feel like one. As always, sending our love and positive thoughts to all of you, especially Ryleigh

  3. Kirstin Johns-Bell Avatar
    Kirstin Johns-Bell

    Oh Jo as a mom, your sister, and auntie to Ry…I have no words for everything. There are so many things going on, wow…I am hoping for more answers than these questions. Love you all!

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