So What Next?

Its still a little unclear what the next step will be, but it will most likely be surgical. Here are the details on how things went during extubation. First, at around 8 am they inserted nasal trumpets into Elias' nose. At noon they gave him 5 puffs of albuterol and shortly after repositioned him onto his stomach. They then proceeded with extubation. He was showing really good signs at first. he did not seem to be breathing too hard or overworking for breaths. Around 12 minutes into extubation Elias began to start crying and became extremely agitated. He clamped down and his vitals dropped very fast. At this point he had to reintubated. They thought about what happens when a person cries and realized it places negative pressure on the airway. Elias does have an area of tracheal malasia (soft spot in the trachea development). That negative pressure they believe caused his airway to collapse because of this soft spot. A few key items to note is that the granulation tissue did not seem to be causing issues with breathing, although it is not 100% it still is not a factor. Secondly, the amount of time Elias lasted really does not factor into the equation. He may have lasted longer if he had not become agitated and started to cry, but by doing it when he did showed them something they may not have seen otherwise. At this point the doctors feel any further attempts for extuabtion seem useless, so surgery is the next step. The question remains what kind of surgery? They are trying to figure out how to approach this and what exactly to do. As we have stated before, since they are in uncharted territory it may take a few days to develop the ultimate plan. We do not expect to hear one until Monday. No one will venture to estimate how much of a set back this is in term of how much longer before Elias gets to come home. Our best guess is another 4-6 weeks putting him home around the beginning of September. We certainly hope for something quicker, but realistically it just doesn't seem possible. Today is the start of our 11th week in the NICU and it certainly gets harder to leave him everyday. Still things have had a much brighter outcome than we expected and for that we are wonderfully thankful. Elias is full of life and brings us joys everyday that we will cherish always. His fighting spirit and determination give us the strength to face each new day that brings us one day closer to bringing him home.