Nick Lilya

First post: Oct 26, 2018 Latest post: May 23, 2019
Nick Lilya was born with severe heart defects.  He had open heart surgery when he was 6 mths old (Glenn shunt) and open heart at 2.5 yrs old (Fontan).   Children who had the Fontan and survived into adulthood are needing liver transplants.   We were hoping Nick would be an exception or not have to deal with serious complications until he was older.   Nick is 23.    

 In the past 8 weeks he has had feet infections, C-Diff, strep and over the past 18 months has had episodes of vomiting and diarrhea of blood.   He has had 4 to 5 units of blood given each time he has been hospitalized.   October 24th Nicks “wife” came home to bloody vomit and stools, Nick unable to get up off the couch or even hold his head upright.   She called an ambulance.  Nicks heart rate was 159 and his oxygen was down to 59.    He was transported to St. Mary’s Hospital in dukith, MN where they admitted to the ICU.   Nick was given blood, plasma and IV fluids.  He has lost over 100 lbs in the past year.   He was so dehydrated in one day in ICU he gained back 20# in liquid.   Yesterday he had a surgical scoping done to look at bleeding and stomach issues. 

Nick is currently awaiting transfer to the U of M Hospital. Mayo declined to take him.   Dr’s are talking liver transplant, heart transplant.  

Nick did a living will and talked with the hospital Chaplain.  Nicks living will allows staff to bring him back up to 3 times and no more than 2 weeks on life support.  

Nick has been married one year as of last Sunday and has been sick on and off since.  Nick and Nicks family appreciate all the thoughts, prayers and kindness at this time.  We are unsure of where this will go for sure and what the result will be.  

Love to all from Nick. 

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

To interact with Nick’s website, sign in or register today.

By registering with CaringBridge, you will join over 300,000 people a day who are supporting friends and family members.

Sign In Or Register