We still do not know much more than we did when we got here. Since our last update Elias has had a few more episodes with the stop breathing. It is really random when it occurs, but it is instantly recognized when you look at him. He has a glazed & confused look on his face. He did actually do it once when an ENT doctor was in the room, so he got an opportunity to witness it and of course react. There is really not much of a consensus opinion as to the reason this just randomly happened. A sleep study has been mentioned several times, which we understand the desire to do that, but all of the episodes with one exception have occurred while Elias is awake. He will be playing and laughing one minute and the next he is not breathing. It is so very difficult to explain in words. Tonight they are simply watching and documenting his vitals. In the morning more of the “Head honcho Doctors” will weigh in with their thoughts. The Pulmonary attending said he would hope that ENT wants to bronchoscope him. They are interested in having a look. We imagine that will happen as we need to see what is going on in there especially with the isolated blood in the secretions. Not that the two are related, but they could.
By the time we were finally admitted and settling into the room Elias had found a new spurt of energy. He was all over the place, laughing at the nurses and doctors, kicking them and doing any other bit of mischief he could find his way into. In between all this though he managed a few more episodes. All total he has had 12 periods today where he has stopped breathing. The last one was the worst, his oxygen saturation levels dropped to the 40’s and we did bag him for about 30 seconds to help him get back up quicker. For reference, anything under 92 for Elias is considered bad. All of the episodes generally last for about 20-30 seconds, although going through them it feels like an eternity. Each time he does it we go back to our CPR training and start with the pre-compression stimulation. This is where you try and get a response that might encourage them to breath and ensure they are conscious. Elias is alert each time, just a little glazed. It is so spooky to look in his eyes when this happens. We usually follow this with dropping a suction catheter and suctioning his trach, which has never pulled anything out and there is not a mucus plug occluding him, but it does always make him cough strongly and that is what gets him back on track breathing. He slowly recovers and within 10-15 minutes he is back to playing, laughing and smiling. Whatever the cause we are hoping for a clear reason and not our typical ambiguous findings. We certainly thank everyone for their thoughts, prayers, calls, emails and comments. It was a stressful and frightening day as I am sure the next few will be anxious as well until we find a cause. Elias is strong and has a way of showing the doctors what he needs, even if it is not crystal clear. We will try to keep everyone updated as best we can through the day tomorrow. Thank you all again for helping us get through this very rough day.