We didn’t learn too much more after rounds. Tyler did spike a fever last night and does have increased lung secretions. It could be a new infection, or the fever could be explained by yesterday’s decrease in steroids, which often mask fevers. The increased secretions could be from the APRV vent dislodging more mucous from the lungs. Or the fever and secretions can be from something called ventilator-associated pneumonia. The cultures are not likely to grow anything due to the antibiotics he’s already on, so it’s really just a guessing game.
The primary reason for removing him from the APRV vent was related to his CO2 gases and his subcutaneous emphysema (air trapped under the skin). Tyler started having trapped air a few days ago, and the thought was that moving him to the APVR vent would actually improve the condidtion by reducing the positive pressure on his lungs.
While this should have worked, unfortunately Tyler’s CO2 gases got dangerously high on the APRV vent, requiring them to increase the pressure settings, which also increased the trapped air under his skin. The typical way they would remove subcutaneous trapped air is through needles. This, however, is not an option for Tyler as the Defibrotide for his VOD increases his risk for bleeding, and any breaking of the skin is a new source for infection. Now he has to go back on the oscillator until the air is absorbed or his lungs improve much more. He is on day 16 of a 5-week course of Defibrotide.
Ron and I have tried to regroup after this latest setback. It was a hard pill to swallow after the emotional highs of yesterday. Although it is just another reminder of how sick our boy really is, we still believe that nothing is impossible with God, and we have full faith that the Lord is healing Tyler. Since we cannot see the whole picture, we are trusting that God’s timing is perfect.