Adventures

In the world of Mason, night is day and day is night. Or at least that's how we figure it. It seems Mason continues to wake more often at night than during the day despite a trying to keep the days busy. We were able to get a little bit of sleep off and on last night, but our longest stretch was actually from 9-11 this morning. I thank God for our fantastic nurse for many, many reasons, but right now, it's because she knows how to be stealthy in the morning and keep people either quiet or at bay so that we can get a few hours of sleep when the rest of the world is awake.

More progress with weaning stuff today. Mason is now totally off of the Nitric Oxide and seems to be tolerating it fine. I was a little worried earlier in the day when his saturations were down a bit from yesterday, but he seems to be rallying still or again and is saturating well on a little less oxygen (82% oxygen right now). He also was able to wean down on his ventilator settings a bit, too. We were lucky enough to work with an incredible respiratory therapist today who knows Mason so well and knows what settings will be optimal for him. She changed to a different mode on the ventilator and turned his inspiratory pressure down to 24. It is amazing how much of a difference it makes when the people providing care take the time to learn about their patients and figure out what they really need instead of assuming based on numbers or diagnosis. We were so fortunate to have such great care providers working with Mason today.

We were also able to keep Mason awake and "entertained/contained" for a few different sessions today. He read books with his Aunt Juli and Uncle Charles, watched TV, played with his toys, played a little pat-a-cake, and went for a wagon ride. Yes, you read that right, Mason went for a wagon ride today. He still cannot sit up on his own, but with some great positioning and planning on the part of our nurse and RT, Mason was able to sit totally protected and cushioned in a little wagon and ride around the PICU a couple of times today. He's still so drugged up that I'm not sure how many PICU's he saw on his ride, but seemed to enjoy it. When we got back into the room, he sacked out in his wagon and slept for a bit. It took him a a little while to get his saturations back up into the high 80's after the ride, but once he did, things stayed better. He was clearly comfortable being on the move.

Mason has quite the fan club around here. Nurses from the upstairs floor where we stayed for so long in Oct/Nov last year, doctors who have worked with him over the last couple of years, and people who continue to work with him now stop by to say hi, show support, and check in on Mason. It is so comforting to see how many people's lives Mason has touched. We are so lucky to have him in our lives!