Carly’s Story

Site created on May 30, 2019

Welcome to Carly’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.
Just a reminder that this page is for updates and for positive vibes only, not a debate forum for patient care or doctor recommendation.
We will update this site daily, and will add links and resources that we find useful as we figure this out.

Carly was diagnosed with the disorder called Guillain-Barré (ghee’-yan bah-ray’) syndrome, or GBS. We believe it was triggered by tonsillitis in April. She had a sharp, rapid decline over Memorial Day weekend, and was transported to the PICU at Levine Children’s Hospital in Charlotte where she was intubated and put on a ventilator to breathe Sunday night.

The good news is that she will recover. The unknown is time. To give you some perspective, her nerves will repair at approximately 1mm per day going from the top to the bottom of her body. She is 5’ 6” tall.

Here’s a summary from the GBS/CIDP Foundation:
GBS is a rare illness typified by the rapid onset of weakness, often accompanied and sometimes even preceded by abnormal sensations, such as tingling or pain. These various changes reflect damage to peripheral nerves, that include motor nerves to muscles that enable movement, sensory nerves from the skin and joints that detect texture, limb position, etc., and autonomic nerves that automatically regulate functions such as heart beat, blood pressure, pupil size, and a sense of bladder fullness. GBS can occur at any time without warning. It affects both genders and all age and ethnic groups. It varies greatly in severity from mild cases of brief weakness that may not even come to a doctor’s attention, to a devastating, life threatening illness with complete paralysis, respiratory failure and inability to swallow.

Newest Update

Journal entry by Robby Messer

Happy New Year!
      Carly's 16U Girls hockey team, the Junior Hurricanes, will be playing at Extreme Ice in Indian Trail, NC this Saturday.  There are two games that day, both against the Lady Rush. Puck Drop is 12:30 for the first game and 4:30 for the second game.  (Training or Main Rink TBD, see info screens in the lobby, admission is free) This is the last time her team plays in this area this season; they begin a long series of games in Maryland, Pennsylvania and Indiana until the season ends mid-March.  If you read this post and would like more information, please send me an email at messerovski70@gmail.com and I will be happy to answer any questions. 
So to the real question you all want me to answer: How is Carly doing?
      The answer is simply amazing.  She continues to gain in strength and stamina due to multiple physical therapy sessions each week.  Her rehab facility, Ivy Rehab, have encouraged and guided Carly along a recovery path that motivates and pushes her to points beyond expectations.  The staff has become her personal coaches, cheerleaders and friends. We she started at Ivy, she was their first patient with GBS, and I believe they now have three.
      Carly's hockey and skating skills have returned as well.  She gains stability and shooting strength each time she steps on the ice (which is like 3 to 4 times a week). Carly remains her own hardest critic and is working really hard on her speed, puck handling and stability when she extends to shoot.  She is still around 75% of where she was when GBS took her down. However, none of this has stopped her from bonding with her team and being a contributor every time she is on the ice. She scored her first and second goals of the season on December 7th in Raleigh against the Lady Rush.  She's scored a few more since then and is racking up assists, not to mention a few penalties for checking. (she takes pride in being a "goon" for the team when needed). She is focused 100% on playing hockey into college and ultimately for the US Olympic women's hockey team. After months of being silent on social media, we are now posting pics and game updates via Facebook or Instagram so please feel free to follow us or her team.
      I will close this update with a non-hockey update: As a family, we still have moments or triggers that bring the past roaring forward. PTSD is not visible like a tracheostomy scar or something you can just ignore. We continue to work on the slow process of emotional healing while Carly's physical recovery progresses at a miraculous pace.  The support we continue to receive from our friends and family is like a security blanket. You know the blanket is always there, but the blanket wants nothing in return. It always offers warmth and happy feelings. 

Peace and love, peace and love.
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