Meningitis in your words

Scott Stillman's story

  • Location: USA
  • Age: Adult 25-59
  • Relationship: Parent
  • Outcome: Recovery with after effects
ScottStillman
ScottStillman - Meningitis in your words
In August 2021, our daughter Lucy returned to St Lawrence University in upstate NY for her second year as a graduate assistant Field Hockey coach. Lucy was a 4 year starter and captain of the team her senior year at SLU.  Lucy returned as an assistant coach and to pursue her graduate degree. A week after returning to campus I got a text that she was not feeling well, and went to the campus clinic for treatment of a UTI, the issues continued, and Lucy went to the local hospital ER.  After a CT scan, Lucy left being told she had a kidney infection and was given medication for that. 

Two days later the team traveled back to Vermont for pre season scrimmage near our hometown. When Lucy got off the bus I knew she was not doing well. I spoke to the head coach and athletic trainer and we all agreed that I would take Lucy to the ER at UVM in Burlington. When we arrived Lucy told me "dad, I can't walk" and I knew this was serious. Fast forward several days and dozens of tests, Lucy continued to spiral downward. 

Lucy suffered cardiac arrest while her Mom and I were at her beside, and was resucitated by the staff very quickly.  It is thought at this time, Lucy suffered a tonsillar brain herniation, where the swelling pushed the lower part of her brain into her spinal column, ultimatley causing a SCI.  Lucy was then intubated and moved to the ICU where she slowly lost mobility.  A day later the hospital called and said that they wanted to move Lucy to Mass General in Boston MA, via medivac helicopter to the Neuro ICU at MGH. 

We followed Lucy to Boston, and spent the next month in the neuro ICU. The Drs at MGH felt removing part of Lucy's skull would help with the pressure from swelling. The infection continued to rage on. MRI's taken clearly showed an SCI in the C-2 area and the prognosis was grim.  The infection was eventually defeated by Lucy's own immune system but the damage was severe. The cause of the virus was never known. We were told that Lucy would not walk again, and may regain moblity below the shoulder, maybe.  Most likely she would remain on vent support for the rest of her life.  We were devasted.  How does this happen to a healthy, fit athlete with no prior health issues?  It happens, and we were told that in most cases of viral meningitis, the virus is never identified.
 
Lucy eventually was extubated and had a trach placed in. Once Lucy was stabilized medically, she was moved to Spaulding Rehab Hospital in Charlestown MA . We did not know what to expect at this point. One of the ICU nurses at MGH said to me, she thinks Lucy will be brushing her own teeth in a year if all goes well. After a week at SRH, Lucy moved her left hand and the Dr's were shocked, two weeks later Lucy moved her feet!  We were so happy that mobility was returning little by little.  What we did not know was the extent of the damage and the long, long road of recovery from a SCI. 

The rehab Dr told me neuro recover is measured in time...days, weeks, months and years.  Where Lucy would end up is unknown.  Rehab became a full time job for the next 3 months inpatient and 2 months of outpatient therapy. Mom never left Lucy's side, by the grace of God and generosity of so many that provided basement apartments, and condos free of charge.  Lucy went from a power wheelchair, to manual wheelchair, to walker, to rollator, to euro crutches to now just one crutch in span of 2 years.  Lucy suffered damage to her vision and was unable to drive.  Suffering from nystagums and double vision at the same time.  This summer Lucy had surgery to correct the double vision and that was a miracle!  Lucy is now able to drive again and the sense of independence and freedom this brought was amazing.  Lucy continues to deal with neurogenic bladder and bowl, but mangages this very well. 

Lucy did return to complete her graduate program this past spring and lives at home with us.  Lucy continues to battle every day, and goes to rehab 3-4 x per week.  Lucy also is an assitant coach at her HS, where she is inspiring young women atheltes daily.  Sharing her mental toughness to battle off the field, and face the toughest challenges that are thrown at her.  We could not be more proud of Lucy's desire to compete daily, the Dr's and Nurses told us high level atheletes are some of the best patients to work, fighting to get back what was lost every minute of every day.
 

I would say as a parent, it was the most frightening experience we have endured. Not knowing what was happening and the inability to treat made us feel helpless. Also do not be afraid to advocate as strongly as possible for your family member and do not be afraid to seek better treatment at more capable facilities. This is so serious and time is the of the essence in getting treatment.

 

The journey is a long one for sure, and some days are really tough, but I have told Lucy on so many occasions , " it could be worse".  We have our daughter still in our lives, and feel for the many that have lost loved ones.  We were close at times to losing her but by some miracle Lucy survived.  The healthcare team at MGH and SRH are incredible and we can't thank them enough for all they did and the continued support from the team.


Lucy Scott in recovery

Thanks to so many friends and family around the world that prayed, and kept Lucy in their thoughts daily as she battled.

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