Why Can't Elias Breathe On His Own?

That is the million dollar question right now for everyone, including the medical professionals. We are scheduling a family meeting with all the doctors & specialists early next week to try and piece together what still needs to be accomplished before Elias can come home.

They did spend today consulting various specialists (pulmonary, Ear, Nose,& Throat). The Pediatric surgery team and NICU team are teaming up with these others to try and determine why Elias can breathe so well on the vent but not when extubated. I know this sounds a bit confusing. It seems like Elias should be breathing better because of the machine, but the reality is, most of the time he his breathing above the vent meaning the machine actually isn't doing anything. There are several procedures that are possible. They will be discussing these in the morning with us. The best theory at this time points to Elias' trachea. Several ideas come from this, the main one being the rings that hold open the trachea, which are made of cartilage, are weakened. Another is a type of obstruction inside. Another idea, which is much more complex, is due to Elias' veinous system (Veins taking blood to/from heart) being slightly different. Simply put, think of it like this, our blood takes the interstate to get to the heart, Elias' takes the back roads. It ends up in the same place but does take longer. With that, it is possible these veins had at one time, or could still be, wrapped around the trachea and damaged it or caused an area of weakness, causing it to collapse. This is not to be confused with the double aortic arch which can cause similar problems, but right now there is no evidence that is the culprit. So as you can see the doctors will have to sort this out and put their brains together to figure this out and determine a treatment plan.

You could tell Elias was frustrated last night and today. He was very agitated and I'm sure very tired and sore from his morning failed extubation. Tomorrow should be a better day. They increased his fentanyl for comfort and are giving him bronchial treatments, the name of the medicine escapes me, but it is essentially the same stuff as in an asthma inhaler. We are hoping to get some pictures and video for everyone, maybe tomorrow depending on his mood. Many of you have called and written the last few days to express your concern and comfort. Thank you! As we have said many times it is nice to have that distraction of talking to someone other than a medical professional, so please do not hesitate. We just wanted to make sure everyone knows how much we appreciate everything, especially the thoughts and prayers. We hope things are well in your worlds and look forward to seeing and hearing from you all.