Week-Long Recap

We have been very impressed by Andrew's progress this week. He's moved from the hi-frequency ventilator, to the combination vent, to the conventional settings, and his numbers have only gotten better. He seems able to keep his oxygen saturation a little higher on these settings, so they've also been able to bring down the oxygen. Since his breathing won't work against the conventional vent, they've removed him from the paralytic and lowered the frequency of his morphine and Ativan doses. His increased motion (and the Lasix) have allowed a lot of his extra fluid to be removed and excreted, so he's looking a lot less bloated than before...no more alien head.

These are all great advances, yet they still don't really capture the progress he has made. From a purely non-statistical, subjective evaluation of the last week, he seems heartier, more active, and more stable than he ever has before. He still gets very upset when anything is done to him, including diaper changes, mouth suctioning, breathing treatments, and head movements. Sometimes, he gets upset just for the heck of it. However, the difference in his response has been like night and day. He still clenches down, tries to cry, turns his face all red, and looks sad...but at some point he stops, and there has usually been very little change in his numbers. During his most active periods, he can still set off some alarms. He can get his mean blood pressure over 75 and he can get his oxygen saturation down to the mid-80's, but neither of those will cause any permanent damage, and he rarely gets bad enough to make anyone concerned. Most importantly, as soon as he quiets down, his numbers go back to normal, his following blood gases turn out fine, and they can continue to wean. In previous weeks, one temper tantrum would throw off his numbers for hours, often freezing his progress.

Even the above paragraph is a bit too scientific. I can't tell you how good it feels to see him awake, opening his eyes, and looking at me. When he gets upset, it's heartbreaking, because no parent wants to see his child cry. But at the same time, I can't help being happy that he's strong enough to cry like a normal baby and still be stable moving forward. Looking into his eyes, I can feel the little person inside him in a way that I haven't experienced to this point...it's a beautiful, beautiful feeling. I know that there will be more setbacks, and that the past week may have been the exception rather than the rule. I'm trying not to get used to progress like this, knowing that every day is different. But at the same time, I can't help but feel like he's turned a corner, and that bringing him home is now a question of time, rather than a possibility.