As many of you know, Alex was diagnosed with Steven-Johnson Syndrome in October 2018. It is a very rare, severe allergic reaction which causes a rash and blisters on all mucus membranes (mouth/throat, eyes, skin, etc) and resulted in Alex being in the intensive care unit (ICU) at Children’s Hospital.
If you know Ben and I, we are numbers people - and these numbers will stay forever in our minds:
• 46 days in children’s hospital
• 41 days in the ICU
• 24 days of not hearing Alex’s voice - he was sedated and on a breathing tube while his throat, mouth, eyes and skin healed
• 1 eye surgery to prevent spread of SJS to the eyes
• 2 seizures
However, it was Children’s Hospital, it’s nurses, doctors, and specialists that did the work while we stood by Alex’s bedside and prayed:
• 31 days of covering Alex head to toe in special gauss, medicines and moisturizers
• 15 days of working with PT and OT to help Alex walk and move again after being in bed for such a long time
• 15 days of special food requests so Alex can regain his strength (mostly pancakes with whip cream and ice cream!)
• 15 days of occupying an active boy with special treatment from the nurses with prizes for good behavior, clowns, artists, performers, video games, and special trips to the cafeteria. Also art work and pictures to fill his room with familiar objects. If you know Alex, he loves to be on the move and keeping him entertained in a bed was a feat on its own!
• 1 bubble farewell party from nurses, doctors and specialists to celebrate Alex’s move out of ICU to the 9th floor
Alex formed such a special bond with so many people at Children’s Hospital. We could not have asked for a better experience going through such a horrible situation. The nurses, multiple specialists, life specialists and social workers did not only take care of Alex but helped to support and calm his crying Mom and pacing Dad. Alex “woke up” from the sedation and was not aware of what he had gone through as he was lucky enough that most of his skin was healed. He only remembers the hospital as a place where “hundreds” of people checked on him, made him feel special and happy and a place he got lots of treats (which he deserved!). We are beyond lucky to have access to such special people and services.
Alex continues to have follow-ups with several specialists but overall is back to his normal, funny, active and sporty self.
Please consider donating to support my fundraising efforts or join the Alex Beckman team and walk with us on Sunday, June 9. The walk is at the hatch shell in Boston and we are hoping for a sunny, fun day.
….because I KNOW that when we band together WE WILL help fund Boston Children's exceptional care and groundbreaking research that can help every child