Bryson's Blog

Living with Trisomy 13

Saturday, August 22, 2009

Our little fighter

Bryson is now off of the vent completely! The docs extubated him (removed the ventilator tubes) He only has a mask now that delivers oxygen. He does have secretions that have to be suctioned out to keep him clear. He was given a steroid to help heal the airway and epinephrine to keep his airways clear. The next hurdle is to get him to start coughing, swallowing to protect his airways or there is the danger of aspiration of those secretions. He is repositioned in his bed every two hours to help the lungs drain of excess fluids or pneumonia can settle in his lungs. His Grandma Tammie got to hold him since he didn't have so many tubes to contend with. Hopefully I will have that opportunity soon as I want to hold him close.

He is an amazing little boy to have gotten so far after such a horrible tragedy. He is beginning to come around a little bit by fluttering his eyes. He is out of it mostly as he is working very hard just to breathe. The breathing rythym is not what it should be, but then, perhaps that's "Bryson's normal" with his central apnea. He will breathe deep and regular, then have one big inspiration, then "bottom out" and about 8-10 seconds later will take shallow breaths only to go back to a regular rythym. We have found that auditory stimuli will get him back on track.

Yesterday, the weirdest thing was happening so we had to call in the doctors and Respiratory Therapists to show them what was going on. Bryson has this Winnie the Pooh, music box that was part of his crib mobile. We would wind up the music box, and while it was playing normal, his breathing would stay on track, however, as with all music boxes, they eventually wind down. So when it started to slow, his breathing would slow with the pace of the music box. When it would stop, he would bottom out. We'd rewind it and lo and behold, would start back to a normal rythym. We kept winding that thing for hours until he was able to establish his pattern

Thank you to those of you who still continue to pray for us. We are so awestruck that Bryson has come so far. Keep the prayers coming.


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