We still haven’t figured this feeding thing out though I thought I was close.  I think sometimes the things we do have nothing to do with the results we see.  I linked ‘gurgling’ with feeding too fast in days past but last night he woke because he was gurgling and choking so I shut off his food.  I had it set to go slowly at 25 ml per hour for the night because my daytime efforts of pumping 50 ml in quickly and then giving him a break just didn’t work.  So when I woke with him early this morning I just simply spent time watching him with no food going in.  He went from moments of breathing clearly to moments of gurgling with no indication of why.  It couldn’t have been the food, he wasn’t getting any.  Some time ago we went through a time with Mikie where we had to suction him often and then the problem just went away.  I think I could probably find reference to it in the journal but I don’t think I need to look it up.  I do remember that we had given up feeding him by mouth because it seemed he no longer could or was willing to swallow.  Then I remember cleaning his mouth and he acted like he was opening his mouth to the touch of a spoon like he did back in his eating days.  Sure enough, he got so he would again swallow food with little effort and with that the respiratory problems disappeared.  So now I am thinking we are back to the no swallowing era.  He does still have a gag reflex and that is good, and I don’t think that the gurgling we hear is caused by fluid in the lungs, but it is in the throat.  When we took him to the doc he said it was all up high, not deep in his lungs.

I think Mikie’s brain is quite the puzzle, turning on and off some functions of his body.  Some of this could also be caused by some medications, maybe a shortage of the right nutrition right now, or who knows what.  We have seen Mikie have problems that just come and go, hopefully this one will go away soon.

Last night his oxygen levels dropped below 90 for a while and though he didn’t seem distressed it took a while to get them back up.  I suctioned, I sat him up, I laid him down, I tried everything.  It came back up when he relaxed after we gave him his Klonopin.  Today he has been resting pretty comfortably with oxygen levels near 100 percent and a heart rate as low as 65, but usually in the 80’s and 90’s.  When he wakes he chokes and coughs and then he is fine.  He still enjoys shaking those toys!