With the breathing tube in, he is not able to cough. As the secretions are breaking up around his lungs he feels like he needs to cough and appears to be gagging. He gets really upset and tries to cry, which the breathing also prevents. I broke down today seeing him struggle with this. It is so hard to know that he needs help and I can't help him. The nurse and respiratory therapist suction him when this happens and then he is able to calm back down.
The fact that Brinkley is a preemie, still small, and has Downs have somewhat created the perfect storm for him. All of these things are playing into his recovery time and making things a little slower than expected. He has his own ideas of how this should work and it is not the same as ours. Originally, the thought was that he would be able to move off of all assistance by today and move back to the pediatric cardiology unit today or tomorrow. That is not going to happen for a few more days. The doctor told us this morning to plan for at least 14 more days here.
Apparently Mr Brinkley is planning on having Christmas at the beach!