Countdown Resumes

Today is the day! Another attempt at extubation! It is a very tense anticipation this time around. We so hope he can fly. This morning they put in the nasal trumpets. He seemed to tolerate that well. After rounds are completed they will come back and extubate.

Yesterday his nurse approached us about suggesting that his cares be changed to every six hours. We chuckled and asked if she could read our minds. We had been discussing ways to approach the subject with his nurses, but were waiting for one we were really comfortable with to ask. That was a big relief to have them be the one suggesting this rather than us. He doesn't need someone waking him up to change diapers or take a temperature. The social worker is also coordinating another family meeting. This meeting is at the request of the residents to help bring all the disciplines together and get back on the same page. She is targeting Thursday or Friday for the meeting.

Elias' surgeon came in to talk to us yesterday as well. He was very apologetic for not catching up to us the day before and we discussed the plan. The end result of the conversation was revealed to be that right now the teams are in uncharted territory. Elias is taking them to areas where there is not a lot of literature or studies on his issues with the airway. You could tell he was a bit perplexed to answer our question of what next if the extubation is not successful? He ended his conversation as he walked out the door, "I hate having to be so wishy-washy." That really helped us to see past our frustrations. Decisions were taking so long, not because someone wanted to drop the ball, but more like "the sky is falling, the sky is falling" what do we do now? I'm sure that has to be a very uncomfortable position to be in as a medical professional. I think hearing that they do not really know exactly what to do sort of put things in a better perspective for us. Sometimes you just need a doctor to come out and say they need more time to determine things. In a way they do when they say "I think we need to run more tests" or "let's just watch this for a few days and see what happens." It buys them time without having to reveal frustration or helplessness for that particular moment. I think if they could have been that honest from the start we would not have reached our current level of frustration.

We asked about the stenosis of the trachea and what he saw. He told us that he is not convinced for certain that this is the case. Since he did not do the first bronchoscopy it was hard to compare. Should Elias not do well with extubation, that will be explored further, but for now we should not be overly concerned with this potential issue.

Well, here is to hopes of a wonderfully successful day!!