Updated: Aug 30, 2019
Peter Dankelson has Goldenhar Syndrome, which necessitated a trach at birth. He's 18 years old and undergone multiple surgeries to enlarge his airway. The following are his own words describing the laryngotracheal reconstruction surgery he is having on September 4, 2019 to close the trach stoma (hole in his neck). The surgery is at Lurie Children's Hospital in Chicago and will involve a lengthy hospital stay of 2-4 weeks.
Peter in his own words...
On September 4th I will be going in for my 31st surgery. I will be getting the hole in my neck closed which is a huge milestone for me. I’ve had the open stoma for my entire life because my airway is so incredibly small.
After a bunch of tests the past year and a half, doctors finally gave the go ahead to close it. As usual medical procedures with people like me need to be way more complicated than what I thought I was going to have. I thought this would be a quick stitch up with some nights in the hospital, but I was way wrong.
For this surgery, doctors will take cartilage from my rib and use it to reinforce my trachea. The hardest part will be being in the hospital for possibly a month. Since this surgery is really delicate, it involves my airway, doctors want me at the hospital so they can monitor me. There’s A LOT involved with that, including going back into surgery so doctors can make sure everything is healing correctly.
There is a lot more involvement with post-op, but that would take an entire essay to write about. I’m very excited to see how life will be once I accomplish this milestone, but this will be an incredibly rough road. I hope that there is also a guitar around so that my time in the hospital can be a bit bearable.
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