Spencer had a MLMB scope and a supraglottoplasty done yesterday morning. They removed some extra tissue from his floppy airway, and things look a lot better. His tongue is still an issue in blocking his airway, but if the surgery yesterday worked, he won't have to get a jaw distraction- at least not yet. If he shows improvement on a sleep study in two weeks, they will just recommend oxygen therapy and reevaluate in six months. I also got pictures of his insides, which I figure he can take to show and tell when he starts school.
Tonight he had an episode of tachycardia and was up in the 225s. They are testing his potassium and electrolytes and as long as he doesn't have a repeat episode. I think he just worked himself up. He hates being inhibated, and will be until the morning in case of swelling. The creepiest part about it is that he doesn't make any noise. I can see him crying, but not hear him. It's heartbreaking.
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I started this blog when my son was diagnosed with a clubbed foot while I was pregnant. His clubbed foot is one of dozens of diagnoses now! Shortly after birth, he was diagnosed with Pierre Robin Sequence. Spencer was diagnosed with Say Barber Biesecker (Ohdo) Syndrome in April of 2012. We recently found out he likely also has Genitopatellar Syndrome. In spite of all his medical issues, he's a happy and fairly healthy kid who is always keeping us on our toes.
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