A Long Week for All of Us

The last couple of days have been a study in contrasts....Andrew has had some really good moments and some not great ones. The most recent problem has been recurring tightness in his lungs. It's hard to tell whether he's getting upset and clamping down, or whether his lungs are clamping down and making him upset. It's probably due to bronchospasms, which are involuntary constrictions of the upper airway. When they happen, even normal breathing doesn't really move much air in and out of his lungs. Fortunately, they can be treated with bronchodilators, misted medications that I've collectively referred to as breathing treatments. He can go from agitated, desaturating, and spiking his CO2 to relaxed, stable, and asleep within 20 minutes after a breathing treatment. He gets routine breathing treatments a few times per day, but he's needed a few extra doses recently.

Fortunately, there are also lots of positives. He's down to minimal ventilator settings and only getting ten breaths per minute....he does fine with it unless he's either agitated or constricted. They've started sprinting him four times per day, for one hour each time. So far he's done well on some sprints and had to stop in the middle of others. On the aborted sprints, his constriction and agitation went away with additional breathing treatments. They've started scheduling his sprints to fall just after his scheduled treatments, and I think that will be a big help.

His feeding rate has also been significantly accelerated. They're now increasing by 3cc every 8 hours, and he's currently getting 19cc per hour. With "full feeds" at 30 per hour, he should get there within a day and a half. Hopefully his body will adjust quickly to getting so much nutrition through his digestive system and he'll be able to take advantage of the additional nutrients, antibodies, and enzymes that just can't be duplicated by a bag of yellow liquid dripping into an IV.

When we visited today, he spent a long time awake and attentive, looking at both of us pretty intently. He also kept sticking his tongue out at us, which was very cute. It made him look like he was smiling, which we haven't seen him do in months. I'm still not sure whether he was smiling at us or taunting us....I'm hoping for smiling.