Frightening Morning – Elias stops breathing

We placed Elias on oxygen at 4am this morning (no we never sleep anymore by the way) because his O2 saturations were dropping into the low 60’s. He was not blue, but a dusky-grey color. That seemed to help so we left him on the oxygen the remainder of the night. We had already planned on calling the ENT doctors today because we have been getting isolated blood when we would suction the last several days. It would appear after very rough dry coughs that sounded like a goose honking. The blood would go as quickly as it came. We thought maybe it was irritation  from the tracheal repair. Around 8am he began to desat again, which did not make sense because he was still on the oxygen. Elias had stopped breathing! He was still alert and looking at us and we were trying to stimulate him to breath. It was a little scary, ok very scary. His sats continued to drop. Each time we would be able to get him going again. We were waiting for a return call from the ENT nurse, but after a few more episodes we decided we were going into the ER. Elias stopped breathing twice on the drive to and then again as we walked back into the ER room. They did a chest x-ray which was clear so no pneumonia & the trach is in the correct position. We are in the ER now waiting for the ENT doctors to get out of surgery to come and take a look. Elias is still on oxygen and we are hoping for a cut an dry answer for the cause. If they can not I fear Elias may be placed on something more than he was, like oxygen or Si pap. That is a step backward in our opinion, but we will wait and see. It is quite likely that the floppy malacia area below the trach is the cause of all this excitement. The question is why is it just starting like this now?

Whatever the reason for this is it has been a pretty stressful and very scary morning. Between all the excitement he seems fine. He is playful, active, & smiling. I would like to keep that going less the drama please! We will update again when we know more. I suspect that we will end up being admitted, would be great if we weren’t, but just don’t have that feeling.