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

Hello and happy Thanksgiving everyone!
     We really have a lot to be thankful for and it seems appropriate that we share another update during a time meant to spend with friends and family.  Over the last three months I have come to appreciate the therapy of pouring my heart into words on this site. However, the effort required to confront these emotions conflicts the efforts we must put into living in the new normal. 
     This might be as difficult to understand as it is to explain, but when can we just embrace the normal issues and situations of parents with a teen aged athlete in high school? There have been so many frightening situations over the last 6 months that have conditioned us to live in fear like a victim of ongoing abuse.  It's okay to look up, it's okay to cry about the past and it's okay to think about the future.  You can tell me that a million times but my heart and my brain haven't completely reconnected.  Sure it's a form of PTSD, but adapting and finding better ways to cope are all just part of what the Messer family now calls normal. Now to answer the question that after 6 months doesn't make me break into tears to answer: How is Carly?
     When I last updated this site, Carly has just started her 10th grade year, meeting her hockey team for the first time and could only step on the ice with assistance.  Remember that determination she has that we told you about daily while she was in the hospital? It is the fuel that has continued to push her to leave GBS in the rear-view mirror.  The past 3 months have been filled with grueling physical therapy sessions, private ice and coach sessions (thank you Pineville Icehouse), Player Development training, focused skills practice at home and weekend team practice in Raleigh.  Oh yes, let's not forget homework, studying and social life.  Her progress has been amazing and unbelievable for everyone that is witnessing it happen.  At the beginning of September Carly was so unsteady on the ice that she couldn't shoot a puck without falling.  She couldn't participate in ice drills and didn't have the stamina to skate more than 10 minutes without needing rest.  By mid-September she had made enough progress for her coach to put her on the ice in very limited shifts. She stepped on the ice for the first time with her team on Saturday September 28th in Baltimore, MD.  I wasn't the only parent in the stands with tears of joy in their eyes.  She played just a little, but just enough to make her want it even more. By the next trip to Maryland in early November, Carly was in regular rotation of the line up. She was still working on her speed and endurance but making lots of progress. She continued to push herself and redefine her limits and her efforts are paying off. During her practice on November 18th, the coach promoted Carly to first line (starting line up) and she still has the second half of the season to look forward to playing as  full time contributing member of her team. I am writing this update while watching her team practice in Wake Forest, NC approximately six months since she was hospitalized. I can hardly believe that on Memorial Day weekend she was completely paralyzed with tubes and machines keeping her alive and doctors telling us that she would probably be in the hospital or requiring at home care for at least six months. Even her doctors and therapists are happy to be wrong about her recovery time.  
     Carly is being amazingly strong mentally too.  Nothing has come easy for her in school but she is applying the same work ethic to studying that she is to physical recovery.  There will always be bullies and jerks in school and even a girl recovering from GBS is not immune to mean kids. She has cried a bit (privately to mom and dad) but always finds a way to stand up for herself and fight back. She was fighting for her life six months ago, so has no problem unleashing a perfect combination of wit, sarcasm and hockey insults on her offenders.  

Carly's team will be playing in Raleigh and Charlotte for a few weekends in December and January. Here is the current schedule:

Polar Ice at The Factory-  Wake Forest, NC
12/7 vs. Lady Rush - 10:45am
12/7 vs. U14A Jr Canes Girls - 4:05pm
12/8 vs. Tri City Eagles (League Game) - 6:50am

 


Charlotte Girls Hockey Weekend - 12/14 - 12/15 - Extreme Ice Center

Game times TBD Stay tuned for an update on game times.

Extreme Ice Center, Indian Trail NC
1/25 vs. Lady Rush - 12:30pm
1/25 vs. Lady Rush - 4:30pm

Peace and Love,

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