So we have a new manifestation of the same issue, Elias just stops breathing or Apnea if you are playing the medical home game. Late last night it began with Elias having arbitrary desat episodes. Through the course of the night into the morning they became more frequent and progressively worse. Then it happened. He got that glazed over look he always has and his heart rate and respiratory rate drop along with the sats. He lost color and it was evident he was not breathing. The confusing part about all this is the fact that he is on the support to help prevent this from happening. So chest x-rays were done, several types of cultures and viral panels were done along with Elias again becoming reliant on oxygen in addition to the Si Pap. The chest x-ray showed a small area in the upper lobe of the right lung that is not moving air completely. It is not necessarily a collapsed area, but problematic. This is also where the tracheal-bronchus (aka pig bronchus) that Elias has enters. A bedside scope showed very thick mucus in the trachea and into the bronchus, probably coming from the lungs. Since Elias has that pig bronchus the mucus is able to clog the lung and the trachea to some degree. This is what they are hoping is the reason. It will be a few days before the cultures are complete and they have started an antibiotic in the meantime to cover a vast area of potential problems. They are going to continue with the bronchoscopy tomorrow. This will give a better look inside and they will be able to wash the lungs and obtain a sample to culture as well. So we hold our breath until tomorrow. The surgery is scheduled for 1:45pm
Earlier in the day Katharine and the nurse tried to change the trach tube to rule out a mucus plug obstruction. However, they were unable to even get the existing trach tube out. Remember there is a new type, cuffed trach in now. This only strengthens our desire to want to return to the uncuffed trach. The ENT folks are contributing the difficulty removing it to swelling and irritation from whatever the issue is causing the excess mucus. While this is not necessarily a set back specifically, it is frustrating and puzzling that the Apnea issue still can become an issue despite what we have done so far to help fix this. It emphasizes the point that several of the doctors made about the vascular ring repair not being the final answer or the end all to the problem. Despite all that has transpired today, Elias has been surprisingly well. In fact he has had a ton of energy. Maybe the antibiotic was just what he needed. He has been very playful and active so that has helped to keep us going through today. It will be very interesting to hear what the “big docs” have to say after the bronchoscopy. We are also anxious to hear what the next version of “the road home” will be. Thanks for the continued thoughts & prayers.