Patrick
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This is Patrick's Story. He was born 11 weeks early on January 30, 2001 and spent over 3 months in the NICU at St. Francis Hospital in Hartford CT. He came home almost two weeks after his twin brother on May 7th, 2001. We had him home until Memorial Day of that year. He was having increasingly harder times breathing. After being told everything from it was RSV (it wasn't), to it was cat allergies (wasn't), our pediatrician finally referred us to the Connecticut Children's Medical Center because he could not tell us what was wrong with our son. We were admitted that night and spent 2 weeks in the hospital with our son on oxygen and the doctors couldn't tell us what was wrong. They finally called in an ENT specialist who told us Patrick needed a bronoscopy. He told us his suspicion was Patrick had Subglottic Stenosis from multiple intubations in the NICU and he wanted to confirm it. Best case scenario was he would do laser surgery to open Patrick's airway and worst case was he would have to do a tracheostomy. On June 1, 2001 (my 24th birthday) Patrick went in for surgery and a few hours later the doctor told us the news. Patrick had 80% occlusion of his airway and he placed a trach. He told us the laser surgery would've just failed. When we went in to see Patrick he looked peaceful and asleep and the trach didn't look as bad as we first thought, however, when he began to cry it just tore our hearts out. He was opening his mouth but there was nothing but silence. We should've expected it but we just didn't. Patrick spent a month more in the hospital due to feeding issues. They wanted to place a G tube but we knew Patrick just needed time so we fought it. He lost weight and was put on NPO several times but finally in early July we got the green light to go home. We refused nursing care for him, preferring to make things as "normal" for all of us as possible. At first it was hard (very hard) but we developed a routine. Both of us work full-time but it works out in the end. Patrick will be two on January 30, 2003 in just a few short weeks (as I write this) and we are ever so proud of him. He's very happy (except during trach changes and I don't blame him). He's learning to speak by placing his finger over his trach since he doesn't like the Passy and takes it off whenever we try. He's learned more then effective ways to communicate through his body language and he garners bunches of attention wherever we take him. Last time he had a broncoscopy his airway was almost 90% occluded due to increasing scar tissue but we're trying for decannulation in early spring/summer of 2003.
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Patrick and twin brother Andrew
