Mr. McKay continues to amaze. He is now officially off of any type of breathing support and he keeps "high sat-ing", meaning that his O2 levels are actually higher than they expect for heart patients and we may need to consider methods for controlling how well he's oxygenating his blood...crazy, we know.
We have just one more major hurdle to clear before McKay can come home--eating. They moved his feeding tube into his stomach today (and if you're wondering how they do that...they just pull out the appropriate length of feeding tube from his nose. I know, pretty gross). It made the poor babe sneeze up a storm to have about 10 cm of rubber tubing pulled through his nose to move the tube from his gut to his stomach. He is tolerating the milk in his tummy well and they will let me try to feed him his first bottle tomorrow. I am thrilled. If I can get my tough guy to swallow well and keep the feeding down we will not only get rid of that ugly yellow tube up his nose, we will also be packing our bags in the next few days.
His night nurse says he's been fussy tonight and wants to be held all the time. That's a good thing. Some of these babies don't want to be touched after having to be left alone for too long. Apparently his fussiness has earned him a bouncy chair and music system that is helping to keep him happy. Go McKay!
I must say that Primary Children's is the most amazing, inspiring and tragic place I've ever spent time. There is so much hope there, so many miracles performed by skilled doctors and nurses, and yet there is a heaviness to the air there that I can only explain as a feeling of mourning. Not necessarily always a mourning for the loss of a child, but it's a mourning for time lost, a permanent change in an awareness of our mortality, and a life-changing awareness of how fragile our lives really are.
We have been touched by some very special nurses and doctors that have seemed to take an extra special interest in McKay. (They probably make all of their patients feel this way.) Never have we felt like like a number. Never has any question we've asked been dismissed. Never have any of our middle of the night phone calls to his nurse felt patronized. They have incorporated us as partners in McKay's recovery and that makes us feel like something very special...we feel like his parents.
It's those relationships we've built over the past week (has it really only been a week???) that will that will make our return visit in a few months bearable. But we can't worry about that now, it's nearly time to bring McKay home and feel like a complete family again. Thank you for your love and prayers.