Play it Again Sam

That old familiar tune was sung today with a chorus of laughter with our nurse. As expected, no extubation, which oddly enough doesn't bother us that much. It is more the "OK, what do we do now" that is starting to become the recurring theme. Just before talking to the doctor this afternoon, to inquire what the next step was, I jokingly told the nurse "I bet he says something like, we want to let him rest through the weekend and recover. Work on getting his vent settings back to the baseline" (they increased them post procedure)....yada yada yada. So the doctor strolls in and tells us they are waiting for a consult with the ENT (I'll get more into that later), but he is on vacation, so we have to wait. Then he says exactly what I told the nurse he would say. I tried not to laugh. It was hard, but I remained composed, and I saw our nurse put her hand over her mouth, trying to hide her amusement as well. After he left she said, "well, you were dead on." I told her this is a familiar tune we have heard so many times I can play it in my sleep. A touch frustrating, but I am not here to rant. We had a chance to vent our frustrations to our Social Worker, particularly about the way this past Sunday was handled. She was very supportive and has offered several suggestions. We feel a little bad for the NICU team right now. They are doing everything possible, but the outside consulting teams seem to be a little slow, and holding them back a little. Our main point today was that we have held steady for a month, doing nothing but waiting, in hopes that the granulation tissue would subside. It appears to be no better than before, so this presents quite a dilemma. We need the ENT to confer with the surgeon and the NICU to offer up a few suggestions on what might be next. We certainly hope that happens on Monday.

A month ago, when we discussed possibilities with the granulation, we found that a tracheostomy possibly could be done, but the position of the granulation tissue might interfere with that working properly. It also is something they would like to avoid. They do not want to remove the granulation because of its proximity to a major artery, which would make it very risky. Apparently there are no drugs to help with the healing process, or they would have administered them already. So it will certainly be a challenge to see what the options are.

In more humorous news, Dr. Elias became Dr. Evil last night, tormenting his poor nurse by kicking off his ostomy bag and extubating himself. Guess he figured he would give them a little pay back for making him wait all day for surgery, hahaha!! Elias rested well today. Not a lot of interaction, as he was surely exhausted from yesterday. He is such a little trooper and so brave. God knows we are so very proud of him. We hope everyone has a good Fourth of July Holiday. Pray for some good news on Monday!!