Today was the worst day Rachael and I have had so far at the NICU. Jack had a very bad episode where he was choking on his secretions and had to be resuscitated in front of us. Sometimes he gets a lot of mucus down his throat that builds up and cannot clear. And even though he has been doing really well with his breathing/swallowing, today while he was in Rachael's arms he started going into a huge crisis and was unable to pull himself out. Actually, he wasn't even responding. We had to put him back in his little bed right away and the nurse suctioned him with the standard suction device that can only reach to the top of his throat. He didn't respond, so they then started bagging oxygen into his lungs as he turned an absolutely awful color of blue. This went on for about 1 - 1.5 minutes until they were finally able to get down there far enough to pull out all of this gathered up mucus. Eventually he started crying and slowly regained color. There were about three nurses and the doctor all working on him. Meanwhile Rachael and I were off in the corner absolutely freaking out. I cannot express how horrible this moment was, and we were both unable to compose ourselves for sometime thereafter. We are still trying to compose ourselves. Absolutely horrible.
They are considering placing their feeding past their stomachs and into their intestines to bypass some of the reflux issues. They may also started getting some medication to help clear up some of the secretions. We are trying to have the nurses deep suction Jack on a regular basis (live every 4 hours, regardless if he appears to need it or not). We are also going to talk to the doctor again about the pros and cons of transfusing Jack's blood in order to get the antibodies out quicker. Even though they have a transient form of the mg, they have it real bad, and exhibit symptoms more in line with a congenital form of myasthenias gravis. So it isn't your typical case.
After the whole incident it took a while for Jack to regain his color. The doctor informed us that their wasn't enough trauma to worry about any brain damage or anything like that. Jack was doing fine right after the incident and was acting as if nothing ever happened.
I hate to post bad news on this site, and try to keep it as positive as possible, but words cannot express what we experienced today.