Zyler's Journey

Our son was born 7 weeks early.  Since that day he has never seen the outside of Sacred Hearts NICU and is now 5 1/2 months old.  He was born with a long gap between his esophagus and stomach (never connected) known as a t.e. fistula, so he has been fed through a g-tube.  He has to keep a suction tube through his nose down his esophagus to keep from drowning in his own saliva.  He was recently diagnosed with VATER syndrome.  He is being transferred to Boston Childrens Hospital in hopes they can connect his esophagus to his stomach.  We are expected to stay in Boston at least 4 weeks.  The procedure/process will take 7-14 days and then a 7-10 day recovery before being discharged.  My husband recently started a new job and does not have enough leave or FMLA to stay the entire trip.  I will be using the reminder of my leave and FMLA to stay by our sons side.  My husband will fly up for when Zyler has his 2nd surgery and when discharged.  I will then take leave without pay when we return for approximately 3-4 weeks (hopefully).  We are asking for assistance for our stay in Boston as we are ultimately paying an additional cost to stay near him, flights, meals and transportation to and from the hospital. 

During this time we will also be caring for another child, daycare, rent and other hosehold bills.

We have not yet heard back from insurance on how much of the medical flight with be covered to transport Zyler.