Respite

I am extremely happy and relieved to report NO NEWS.

Here's the current thinking on yesterday's, ahem, "spells". So, the second clamping down was clearly the result of the water getting into Jane's lungs. The first, the one earlier in the morning, had no obvious cause BUT Awesome Nurse Adrienne did notice that somehow some milk had gotten into the suction catheter. (In the picture below, and by the way: BELLY, the suction catheter is that multi-colored thing to the right of Jane's face that looks like it's encased in Saran Wrap -- it's used to get any gunk Jane's trying to work out of her lungs [mucous, loogies, etc.].)

The catheter is a closed system; the only way for food to get in is if it's drawn up from airway. Which means it's getting down into her airway after she spits up. Which, you know, BAD.

Awesome Respiratory Therapist Lon realized all this, and concurrently realized that there may be a simple solution (please, god). The tube in Jane's trachea has a little cuff around it that can be inflated or deflated as necessary to fine tune the fit. If it's inflated, in theory it should block anything from getting down into the airway from her throat. So he pumped it up and so far, no more episodes. Yes!

The ENT resident came up to check on Jane and said that a longer tube wouldn't help with the spells, so let's hope the cuff does the job. On Monday, the surgeon will come up and do the first trach change (the trach will be changed weekly from here on out; the surgeon does it the first time and checks to see that everything's healing correctly). He's putting in a different, more flexible tube, and I'm hoping that might make Jane more comfortable; it'll bend as she moves. The new tube lies differently than the old set up did, so I think that's one of the things that's throwing her a little bit. Her whole life she'd had a tube lining her airway in a particular way and goes to sleep one day, wakes up and finds everything changed? That'd be tough on anyone.

She spent most of the day sleeping today. Her breathing has been fast, she's breathing hard when she's awake, and her heart rate is uncomfortably elevated unless she's snoozing, so I'd just as soon she stay sleepy. Today she wouldn't fall asleep unless she had her pacifier AND was holding my finger AND I was stroking her head.

I'd accuse Jane of being high maintenance, but the poor thing did just have surgery. She can have as many treats as she likes until she's feeling better.

It's hard to say how she's feeling right now. She's definitely agitated when she's awake. Is she in pain? Just uncomfortable from the new situation? Struggling because of the lobe? All of that? I sort of think yes, to all of it.

In less consequential news, I was trying (mostly unsuccessfully) to get a handle on the dumping ground that is Sarah's playroom the other day when I found a picture of Tom as a baby.

Quite a resemblance, don't you think? Tom's parents, after visiting Jane earlier this fall, said as they were leaving, "She could have been one of our babies!" It wasn't until I saw these pictures side by side that I understood what they meant.