TrachKids.org

My daughter's name is Ava Langston Burnette.  She was born at Sacred Heart Medical Center in Pensacola, FL at 26 weeks.  Her birth weigh was 15.9 oz.  She went septic on July 4, 2010 and wasn't expected to make it through the night. She required assistance with the vent and nitric oxide for awhile but she overcame that ordeal on more than one occassion.  She went septic twice more after that.  She was on the vent for two months and eventually graduate to room air without any assistance.  She had to have a hernia repair surgery on October 2, 2010 and had to be intubated again.  This time she did not come off the vent and had to receive steroids because her airway was so inflammed.  When she finally came off she had a stridor.  We were finally released from the NICU without any assistance.  The first week home she still had the stridor and had these death and dying spells where she would stop breathing after she had a bottle.  It was awful and very scary because it was so unexpected.  So we became adjusted the episodes.  She gained weigh very slowly; she was only gaining one pound a month.  In December, she was breathing very rapidly and just had this tired look on her face.  At that moment I knew something was wrong.  So I took her to the ER and when we got there her O2 stats were in the low 90s.  So they admitted her into the hospital on December 14th, since she was a ex-premie and had the diagnosis of chronic lung disease. It was about midnight when we got a room.  So she got settled in her crib and I tried to get some sleep but her monitor kept going off.  So her nurse said that she would watch her at the front dresk while I got some sleep.  So i fixed her a bottle and told the nurse what signs to look for when she has one of those episodes.  Well next think I know, when I wake up, the nurse and the neonatologist are standing over me.  He introduced himself and said that Ava has had trouble breathing and had to be intubated and that she was in the NICU.  I was in a total panic because she was about to be lifeflighted back to Pensacola.  I went into the NICU to see her, I just broke down and cried.  She was so swollen from the fluid she was receiving and fighting the intubating tube.  They had her heavily medicated and restrained to the bed. she looked at me with the beautiful brown eyes and I just lost it.  So I said my goodbyes and went home to tell my husband and her brother and sister what was going on.  So we went back to Pensacola until the 22nd of December.  We saw the pulmonologist and he sent us home on 1 liter of oxygen. A month later, we were airlifted again because of respiratory distress.  So this time I was very insistant of her seeing the pulmonologist.  So he decided to do a bronch to see what was wrong her airway.  So we went in for surgery and he came out five minutes later and said he could not get past her vocal chords and decided to call in a ENT.  So the next day we attempted to do it again.  And again, five to ten minutes later, they called me to recovery but this time we did not go directly to her, we had to have a consultation with the doctor.  I already knew in my heart something what terribly wrong. He said she has been intubated and that her airway was the size of a coffee stir straw and that she needed a trach now.  he said she had subglottal stenosis, tracheomalacia, and tracheobronchomalacia.  I was stunned because this was a last result and she needed a stable airway.  So I called my husband and my NICU family to discuss her options.  So I told him not to remove the intubation tube until we made a decision.  So I asked for a second opinion from a pediatric ENT. They called in one from Jacksonville and it was decided this was her best option right now.  So after we decided to go on with the surgery, she had it completed a couple of days later.  After surgery she went back to PICU and went into septic shock.  She had a very bad staph infection and was very heavily sedated again. After we recovered from this go round with the drops in blood pressure and heartrate. We finally bad it to the other side.  She is now 9 months and weighs 11 pounds.  She is doing very well with the trach.  and will have surgery again on May 11 to correct the stenosis.  This girl is a true miracle and has a fighting spirit.