We had another care coordination meeting today with the doctors, but it was much smaller than last week. This is mostly because Casey’s feeding is going well and that’s one less thing to talk about. However, her lung continues to be a real problem that is not responding to treatment. Casey has looked a little better the last couple days (heart rate lower, moving more), but she is also on a lot of drugs like morphine that help her pain but hurt her breathing. The longer her lung remains collapsed, the more likely it can’t be inflated at all.
There are three things we can try before considering more drastic measures such as intubation / ventilation. First, we will increase the pressure on her mask / BiPAP treatment, in case her natural upper airway obstruction isn’t letting all the pressure through to the lungs. Second, we can try something called a nasal trumpet, which is a shunt fed from the nose to the back of the throat. It is meant to maintain a better airway during treatments, but placement for Casey will be very difficult. Our third and final option before intubation is a bronchoscopy, where a line is fed into her bad lung to look for and clear any mucus plugs or other obstructions preventing inflation.
We need to give each option about a day to see if it is working. We get an xray early every morning, so we will know right away if the collapse is improving with each option or if we should try the next one. If things don’t improve with all three, we will be re-considering intubation over the weekend. This is hard for us, as Casey’s anatomy makes it progressively harder to extubate with each procedure and as she gets older.
We also got the results of the abdominal and chest CT scan from Monday. Surgery is officially off the table right now. Even if Casey’s lungs were healed, her anatomy and organ size/positions create way too much risk. The result doesn’t surprise us, but it is easier to take since her GJ tube seems to be doing it’s job so far.
Thanks to Cappy and John for bringing us lunch today and visiting with Casey. Another meal outside the cafeteria makes us very happy!