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TrachKid Profile

Kane Aubrey Robitaille was born November 15, 2006, three weeks early in Daytona Beach, Florida.  Having had great prenatal care and no signs of complication, I was shocked and scared when he was born, unable to breathe for himself.  The Neonatal Doctors at Halifax, unable to diagnose him, suggested that he get transfered to Winnie Palmer Hospital for Women and Babies in Orlando.  The doctors placed chest tubes in both his sides and put him on a ventilator.  He then was picked up by an ambulance sent from Orlando.  His father went with him and I met him there the following day. 
The new team of doctors had trouble diagnosing him, but did find small pnemothoraxes in both his lungs.  And they were treating him for persistent pulmonary hypertension.  They made the decision to put him on the ECMO machine, which is a heart and lung bypass machine which allowed Kane to work on healing himself while his blood was being circulated for him.  Three days later his lungs had healed and his pulmonary hypertension was tapering off.  They removed him from the ECMO machine.  Next step, try to get him to breathe on his own-  not nearly as easy.  Weeks come and go and the doctors try just about everything to excabate Kane successfully.  But unfortunately, each try fails, and we are left with a diagnosis and one option left.  The diagnosis is that Kane has trachamalacia, which is explained to me as a "floppy airway" and the last option is to do a tracheostomy. 
 As scared as we were, we prayed and researched and continued forward as the doctors suggested.  Kane got his Trach in December 2006.  And what a relief that was.  Kane no longer looked uncomfortable or troubled.  Almost immediately he was placed on room air and was working completely on his own.  He looked at peace, and ready to face the world.  Next came our training on how to care for him.  I stayed 10 hours in the NICU a day, and although the nurses probably were sick of me, I learned and became a professional at caring for my son. 
After having a small setback of Kane not ingesting enough milk on his own, He got a Gastrostomy tube and on January 25, 2007 we brought him home!!!!!  What a joy he was to have!  The hardest part was keeping people away from him so that he could get enough rest!  Apparently he was happy at home because he began eating like a champ and the G-tube was removed 5 weeks later. 
For the next year not much happened medically.  Kane continued to see his Pulmonologist and ENT doctors regularly and the goal was for him to grow stronger and bigger.  And that is what he did!  We took Kane for Bronchoscopies about every six months.  In January 2008, the ENT Dr. noticed a small granuloma of scar tissue.  Deciding not to do anything about it quite yet, he scheduled a laser surgery procedure for six  months later.  Well, here we are, July of 2008.  The laser was not effective in removing the granuloma.  It has grown bigger and tougher and blocks about 75% of Kane's airway.  THe doctor has given me 2 options:  I am at a fork in the road.  Do I wait 6-12 more months and have him try to cut the scar tissue out through his mouth or do we procede with a much tougher surgery where he will make an incision in Kane's throat and remove it that way.  How can I make a decision like this... I am not  a doctor.  I am a mother who wants the best for her son.  Any words of wisdom are welcomed! 
God Bless!

• Gender: Male
• Demographic Region: North America
• Siblings: None
• Medical Conditions: Tracheomalacia, pulmonary hypertension, Granuloma
• Ethnicity: white

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17 weeks 6 days

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United States

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Florida