Tyler was less stable today. His blood pressures and oxygen sats kept dropping. His right upper lobe had not improved at all from yesterday’s chest x-ray, so he had to go up on his airway pressures again to try to get his lung inflated. The total arsenol they would typically use against a collapsed lung is not an option for Tyler due to being on the oscillator. Being limited to going up on airway pressure alone means it’s going to take more time.
Another concern is his bilirubin levels are on the rise again for some reason. Three days ago we were excited because his total bili had finally gone below 2. If it had stayed below 2, the plan was to take him off the defibrotide which, although it saved his life from the VOD, is still a very dangerous drug for him to remain on. So, we are ramping up our patience and just waiting, waiting, and then waiting some more.