Kiera had another low day, but it's hopefully looking up for tomorrow. She had a longer trach put in during a bronchoscopy Friday afternoon in order to bypass her bronchus suis. She was doing pretty well, although we didn't see many immediate positive effects like we'd hoped. Then early Sunday morning (4am ish) she had a major set back in which she was "un-baggable" and hard to ventilate. She had to be paralyzed and sedated (yet again). Once the muscle relaxants took effect she was able to be ventilated, and they brought her O2 Sats and heart rate back up to acceptable levels. Then today, while still under heavy sedation, Kiera had another bronchoscopy, and it was determined that she would be better off going back to the previous shorter trach tube. After they changed the tube, her PEAK pressures in her lungs came back down to a better level in the 20's and 30's rather than the too high levels of 50's and 60's they had reached.
Kiera is currently still paralyzed and sedated. Maybe tomorrow the doctors will lift the sedatives and see how she does. Jer and I have spent the weekend pretty numb and scared. Kiera was pretty unstable yesterday after having been completely charming and playful on Saturday, but it appears it may have been entirely attributed to the longer trach tube. On a bizarre plus side, it DOES seem that 2 days of the longer trach DID reduce the size and irritation of her bronchus suis. It just doesn't seem to have solved anything. So.... we're back to trying to ween and wait.
Love,
Therese
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