Not Making Memories

Alec continues to make good progress and he may be off the ventilator as early as tomorrow.  Although his chest X-ray is showing little day-to-day improvement, he is weaning off the ventilator well.  They continually dial back how much support he receives from the vent and he continues to do more of the breathing on his own. And his blood counts are great: he has a fully functioning immune system again.

He is more alert and interactive when he is in more of a wake state.  We can ask him yes or no questions and he responds.  He cooperates well

Alec insists this is not his good side.

during oral care too.  But he’s not fond of having his picture taken.

However, because of the sedatives, he can’t make new memories. I finally figured out to ask about that yesterday.  They had told me that he won’t remember anything about his time on the vent later. Yesterday any time he woke up, he would feel around his face to touch the different tubes and the nurse would say “You have tubes there to help you breathe, sweetie.” After a few time through the same routine I thought to ask if he remembers anything day to day.

So it’s like the movie Momento: every time he falls asleep he doesn’t even remember what happened before he fell asleep.  I got a good routine going last night with him during his more awake times.  He’d wake up with a look like what’s going on? and I’d say “you’ve got some tubes here to help you breathe, and here’s your fuzzy, and Daddy’s right here with you.”  He’d look at me as if to say oh, okay and fall back asleep.  And five minutes later he’d wake up and look at me again, what’s going on?

There are actually advantages to this condition.  Grandma made a Thomas the Tank Engine card for him, and it is a brand-new surprise every time he sees it.  I put a Percy engine in his hand to hold so he doesn’t fiddle with tubes and wires, and he gets to be repeatedly occupied by What’s this? Oh look, its Percy. I also play some Bach cello suites for him on a portable stereo and he doesn’t get tired of hearing the same ones over and over.

The other change is that his oft-promised boots finally arrived. (The boots help keep his ankles in a good position when he begins walking later.)  The physical therapist told me the boots would be here “tomorrow” about six days ago. I started to complain a bit during morning rounds to see if we could track them down and they happened to arrive while we were still standing around talking. They are green, so I’m calling them his elf boots.

These boots aren’t made for walking.

Speaking of morning rounds, it was a good joke around here that I missed the meeting yesterday.  I’ve arrived every single morning by 8:30, and rounds have consistently started for Alec at 10:30. I always attend rounds, take lotes of notes, and ask lots of questions.  Yesterday was my brother’s birthday, though, and I treated him to breakfast and took my time getting ready. “They never get to Alec early,” I said.  But I got to Alec’s room at 9:15 and they had just finished rounds without me.

I came back last night for a couple hours to sit with Alec after the shift change, and even the night nurse said, “I heard you missed rounds this morning!”