I haven't updated in a while because I haven't had the heart to write these things out. Charlie is below 20 lbs now and we're barely getting her fed. I don't feel a PICC line or broviac is a good thing long-term. We are considering a temporary PICC line to see if all she needs is a gut rest. But if we still can't get her feeds in after that, we may be shutting them off and switching back to hospice.
Her pulmonologist insisted that kids like Charlie almost always die from something respiratory. We never thought her digestive system would be the first to go.